Materiały źródłowe

• #1 Motor Neuron Disease – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK560774/

  Motor neuron disease (MND) has been shown to approach 2 to 3 per 100,000 population, while a lower frequency (less than 1 per 100,000) of ALS has been demonstrated in the South and East Asian community. […] Approximately 10 to 15 percent of individuals with ALS have familial disease. […] The estimated lifetime risk of sporadic ALS is one in 400. […] While bulbar onset ALS has been shown to be more common in females, spinal onset illness has been shown to be common in males. […] Progressive muscular atrophy (PMA) represents 2.5 to 11 percent of cases with MND. With an incidence of 0.02 per 100,000 population, it is a much rarer form of the disease.

• #2 Motor Neurone Disease Information & Support | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/for-health-professionals-service-providers/overview-of-mnd-for-health-professionals

  Motor neurone disease (MND) is a fatal, progressive, degenerative, neurological condition. MND occurs in all countries of the world. The impact of ALS/MND on the community is usually measured by the incidence and prevalence of the disease. Worldwide the incidence of ALS/MND is 2 per 100,000 of total population, while the prevalence is around 6 per 100,000 of total population. Research has found that the incidence is higher in people aged over 50 years. Although classified as a rare disease based on its prevalence it is estimated that approximately 140,000 new cases are diagnosed worldwide each year. The lifetime risk of developing ALS/MND has been calculated to be 1/300. […] In Australia, on average, each day two people die from MND and two people are diagnosed with MND. A Deloitte Access Economics report commissioned by MND Australia in 2015 estimated that there were 2,094 Australians living with MND, of whom 60% were male and 40% female. The overall prevalence rate was estimated to be 8.7 per 100,000 Australians, or 1 in 11,434 Australians, with the highest prevalence rate reported in males aged between 75 and 84 years.

• #3 Motor Neurone Disease Information & Support | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/for-health-professionals-service-providers/overview-of-mnd-for-health-professionals

  Motor neurone disease (MND) is a fatal, progressive, degenerative, neurological condition. MND occurs in all countries of the world. The impact of ALS/MND on the community is usually measured by the incidence and prevalence of the disease. Worldwide the incidence of ALS/MND is 2 per 100,000 of total population, while the prevalence is around 6 per 100,000 of total population. Research has found that the incidence is higher in people aged over 50 years. Although classified as a rare disease based on its prevalence it is estimated that approximately 140,000 new cases are diagnosed worldwide each year. The lifetime risk of developing ALS/MND has been calculated to be 1/300. […] In Australia, on average, each day two people die from MND and two people are diagnosed with MND. A Deloitte Access Economics report commissioned by MND Australia in 2015 estimated that there were 2,094 Australians living with MND, of whom 60% were male and 40% female. The overall prevalence rate was estimated to be 8.7 per 100,000 Australians, or 1 in 11,434 Australians, with the highest prevalence rate reported in males aged between 75 and 84 years.

• #4 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  ALS is the most common motor neuron disease in adults and the third most common neurodegenerative disease after Alzheimer’s disease and Parkinson’s disease. Worldwide the number of people who develop ALS yearly is estimated to be 1.9 people per 100,000 per year, while the number of people who have ALS at any given time is estimated to be about 4.5 people per 100,000. In Europe, the number of new cases a year is about 2.6 people per 100,000, while the number affected is 79 people per 100,000. The lifetime risk of developing ALS is 1:350 for European men and 1:400 for European women. Men have a higher risk mainly because spinal-onset ALS is more common in men than women. The number of those with ALS in the United States in 2015 was 5.2 people per 100,000, and was higher in whites, males, and people over 60 years old. The number of new cases is about 0.8 people per 100,000 per year in East Asia and about 0.7 people per 100,000 per year in South Asia. About 80% of ALS epidemiology studies have been conducted in Europe and the United States, mostly in people of northern European descent. There is not enough information to determine the rates of ALS in much of the world, including Africa, parts of Asia, India, Russia, and South America. There are several geographic clusters in the Western Pacific where the prevalence of ALS was reported to be 50-100 times higher than in the rest of the world, including Guam, the Kii Peninsula of Japan, and Western New Guinea. The incidence in these areas has decreased since the 1960s; the cause remains unknown.

• #5 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  ALS is the most common motor neuron disease in adults and the third most common neurodegenerative disease after Alzheimer’s disease and Parkinson’s disease. Worldwide the number of people who develop ALS yearly is estimated to be 1.9 people per 100,000 per year, while the number of people who have ALS at any given time is estimated to be about 4.5 people per 100,000. In Europe, the number of new cases a year is about 2.6 people per 100,000, while the number affected is 79 people per 100,000. The lifetime risk of developing ALS is 1:350 for European men and 1:400 for European women. Men have a higher risk mainly because spinal-onset ALS is more common in men than women. The number of those with ALS in the United States in 2015 was 5.2 people per 100,000, and was higher in whites, males, and people over 60 years old. The number of new cases is about 0.8 people per 100,000 per year in East Asia and about 0.7 people per 100,000 per year in South Asia. About 80% of ALS epidemiology studies have been conducted in Europe and the United States, mostly in people of northern European descent. There is not enough information to determine the rates of ALS in much of the world, including Africa, parts of Asia, India, Russia, and South America. There are several geographic clusters in the Western Pacific where the prevalence of ALS was reported to be 50-100 times higher than in the rest of the world, including Guam, the Kii Peninsula of Japan, and Western New Guinea. The incidence in these areas has decreased since the 1960s; the cause remains unknown.

• #6 Incidence and lifetime risk of motor neuron disease in the United Kingdom: a population-based study

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3093130/

  To estimate the incidence and lifetime risk of motor neuron disease (MND) in a population-based sample in the United Kingdom. […] In the period 1990-2005, 830 new cases of MND were identified. Age-standardized incidence of MND was 2.6 per 100,000 persons per year in women and 3.9 in men. The lifetime risk of MND, adjusting for competing causes of death, was 1 in 472 (2.1 per 1000) in women and 1 in 350 (2.9 per 1000) in men. […] In this population-based database, we found that MND incidence is higher in men than women, peaking in both sexes at age 75-79. […] The estimated lifetime risk of developing MND was approximately 1 in 350 for men and 1 in 500 for women. […] The (unadjusted) lifetime risk of MND in the GPRD was similar to estimates from population-based studies in Ireland and Scotland, though higher than in the Italian registries. […] Incidence rates of MND in the GPRD were similar to those reported from previous prospective studies conducted in Europe, including population-based registries.

• #7 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  ALS is the most common motor neuron disease in adults and the third most common neurodegenerative disease after Alzheimer’s disease and Parkinson’s disease. Worldwide the number of people who develop ALS yearly is estimated to be 1.9 people per 100,000 per year, while the number of people who have ALS at any given time is estimated to be about 4.5 people per 100,000. In Europe, the number of new cases a year is about 2.6 people per 100,000, while the number affected is 79 people per 100,000. The lifetime risk of developing ALS is 1:350 for European men and 1:400 for European women. Men have a higher risk mainly because spinal-onset ALS is more common in men than women. The number of those with ALS in the United States in 2015 was 5.2 people per 100,000, and was higher in whites, males, and people over 60 years old. The number of new cases is about 0.8 people per 100,000 per year in East Asia and about 0.7 people per 100,000 per year in South Asia. About 80% of ALS epidemiology studies have been conducted in Europe and the United States, mostly in people of northern European descent. There is not enough information to determine the rates of ALS in much of the world, including Africa, parts of Asia, India, Russia, and South America. There are several geographic clusters in the Western Pacific where the prevalence of ALS was reported to be 50-100 times higher than in the rest of the world, including Guam, the Kii Peninsula of Japan, and Western New Guinea. The incidence in these areas has decreased since the 1960s; the cause remains unknown.

• #8 What is MND? | MND Association

  https://www.mndassociation.org/about-mnd/mnd-explained/what-is-mnd

  MND affects up to 5,000 adults in the UK at any one time. There is a 1 in 300 risk of getting MND across a lifetime. It can affect adults of any age, but is more likely to affect people over 50. […] As motor neurone disease is not common, general health and social care professionals may not see many cases. This means it is important to seek out specialists who have appropriate experience in its treatment and care usually with referral to neurological services.

• #9 Incidence and lifetime risk of motor neuron disease in the United Kingdom: a population-based study

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3093130/

  To estimate the incidence and lifetime risk of motor neuron disease (MND) in a population-based sample in the United Kingdom. […] In the period 1990-2005, 830 new cases of MND were identified. Age-standardized incidence of MND was 2.6 per 100,000 persons per year in women and 3.9 in men. The lifetime risk of MND, adjusting for competing causes of death, was 1 in 472 (2.1 per 1000) in women and 1 in 350 (2.9 per 1000) in men. […] In this population-based database, we found that MND incidence is higher in men than women, peaking in both sexes at age 75-79. […] The estimated lifetime risk of developing MND was approximately 1 in 350 for men and 1 in 500 for women. […] The (unadjusted) lifetime risk of MND in the GPRD was similar to estimates from population-based studies in Ireland and Scotland, though higher than in the Italian registries. […] Incidence rates of MND in the GPRD were similar to those reported from previous prospective studies conducted in Europe, including population-based registries.

• #10 235 Epidemiology of motor neurone disease in wales | Journal of Neurology, Neurosurgery & Psychiatry

  https://jnnp.bmj.com/content/90/12/e58.2

  National registries of patients with rare disease such as motor neurone disease (MND) can lead to more reliable epidemiological estimates. […] The South Wales MND Network records clinical data on all patients referred to the specialist MND clinics in south Wales and diagnosed with MND. […] There were 202 people with MND on the prevalence date, of whom 122 (60.4%) were male. The median time from onset to diagnosis was 1.4 years (interquartile range 0.92.4 years). Prevalence in the region was 8.8 per 100,000. This varied by local health board, with the highest prevalence seen in Aneurin Bevan University Health Board (12.1 per 100,000), and the lowest in Abertawe Bro Morgannwg University Health Board (7.0 per 100,000). Male:female ratio was similar for all local health boards (2=3.6, p=0.46). […] Our estimates of prevalence are in keeping with other European countries. Future investigation into variation in MND prevalence may provide insights into underlying mechanisms of disease.

• #11 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  ALS is the most common motor neuron disease in adults and the third most common neurodegenerative disease after Alzheimer’s disease and Parkinson’s disease. Worldwide the number of people who develop ALS yearly is estimated to be 1.9 people per 100,000 per year, while the number of people who have ALS at any given time is estimated to be about 4.5 people per 100,000. In Europe, the number of new cases a year is about 2.6 people per 100,000, while the number affected is 79 people per 100,000. The lifetime risk of developing ALS is 1:350 for European men and 1:400 for European women. Men have a higher risk mainly because spinal-onset ALS is more common in men than women. The number of those with ALS in the United States in 2015 was 5.2 people per 100,000, and was higher in whites, males, and people over 60 years old. The number of new cases is about 0.8 people per 100,000 per year in East Asia and about 0.7 people per 100,000 per year in South Asia. About 80% of ALS epidemiology studies have been conducted in Europe and the United States, mostly in people of northern European descent. There is not enough information to determine the rates of ALS in much of the world, including Africa, parts of Asia, India, Russia, and South America. There are several geographic clusters in the Western Pacific where the prevalence of ALS was reported to be 50-100 times higher than in the rest of the world, including Guam, the Kii Peninsula of Japan, and Western New Guinea. The incidence in these areas has decreased since the 1960s; the cause remains unknown.

• #12 Motor Neurone Disease Information & Support | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/for-health-professionals-service-providers/overview-of-mnd-for-health-professionals

  Motor neurone disease (MND) is a fatal, progressive, degenerative, neurological condition. MND occurs in all countries of the world. The impact of ALS/MND on the community is usually measured by the incidence and prevalence of the disease. Worldwide the incidence of ALS/MND is 2 per 100,000 of total population, while the prevalence is around 6 per 100,000 of total population. Research has found that the incidence is higher in people aged over 50 years. Although classified as a rare disease based on its prevalence it is estimated that approximately 140,000 new cases are diagnosed worldwide each year. The lifetime risk of developing ALS/MND has been calculated to be 1/300. […] In Australia, on average, each day two people die from MND and two people are diagnosed with MND. A Deloitte Access Economics report commissioned by MND Australia in 2015 estimated that there were 2,094 Australians living with MND, of whom 60% were male and 40% female. The overall prevalence rate was estimated to be 8.7 per 100,000 Australians, or 1 in 11,434 Australians, with the highest prevalence rate reported in males aged between 75 and 84 years.

• #13 Motor Neurone Disease: Symptoms, Prevention, and MND

  https://brainfoundation.org.au/disorders/motor-neurone-disease/

  Motor Neurone Disease (MND) is uncommon but not rare. Recent statistics estimate there are over 2,000 people in Australia currently diagnosed with MND and every day 2 Australians are diagnosed with MND. […] Most cases occur spontaneously though some are hereditary (about 10%).

• #14

  https://link.springer.com/article/10.1007/s00415-024-12219-1

  Motor neuron diseases (MND), with amyotrophic lateral sclerosis constituting most cases, are rare conditions of unknown etiology. There have been reports of an increase in incidence during the latter half of the twentieth century in various Western countries, including Sweden. This study provides updated data on the incidence of MND in Sweden during the last 20 years. […] In the early 2000s, there was a crude incidence rate of 3.5-3.7 per 100,000 person-years, which then increased to 4.0-4.6 from 2008 onward. […] The incidence rate of MND in Sweden now seems to have surpassed 4 cases per 100,000 person-years. This is higher when compared to both other European countries and previous Swedish studies. […] Our findings showed an average crude incidence rate of 4.1 per 100,000 person-years for MND, during 2002-2021 in Sweden: 3.5 for females and 4.7 for males. This is a higher estimate compared to the previously reported European average of 2.0-2.3 per 100,000 person-years for ALS.

• #15 Basic facts about MND – MND NZ

  https://mnd.org.nz/about-mnd/what-is-mnd/basic-facts-about-mnd/

  Motor neurone disease (MND) is the name given to a group of closely related disorders that affect the motor neurones. […] The incidence rate of MND in NZ is higher than the rest of the world – researchers are trying to find out why so we can change it. […] MND can affect adults at any age but most people diagnosed with MND are over the age of 40, with the highest incidence occurring between the ages of 50 and 70. […] In New Zealand an average of 144 people are diagnosed with MND every year about 3 in every 100,000 people. Internationally, the incidence of MND is much lower (approximately 2 in every 100,000 people). […] Approximately 400 people in New Zealand are living with MND. […] Each year MND causes the deaths of an average of 120 people in New Zealand. […] We don’t know why the rate of MND in New Zealand is higher than the international average.

• #16 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  ALS is the most common motor neuron disease in adults and the third most common neurodegenerative disease after Alzheimer’s disease and Parkinson’s disease. Worldwide the number of people who develop ALS yearly is estimated to be 1.9 people per 100,000 per year, while the number of people who have ALS at any given time is estimated to be about 4.5 people per 100,000. In Europe, the number of new cases a year is about 2.6 people per 100,000, while the number affected is 79 people per 100,000. The lifetime risk of developing ALS is 1:350 for European men and 1:400 for European women. Men have a higher risk mainly because spinal-onset ALS is more common in men than women. The number of those with ALS in the United States in 2015 was 5.2 people per 100,000, and was higher in whites, males, and people over 60 years old. The number of new cases is about 0.8 people per 100,000 per year in East Asia and about 0.7 people per 100,000 per year in South Asia. About 80% of ALS epidemiology studies have been conducted in Europe and the United States, mostly in people of northern European descent. There is not enough information to determine the rates of ALS in much of the world, including Africa, parts of Asia, India, Russia, and South America. There are several geographic clusters in the Western Pacific where the prevalence of ALS was reported to be 50-100 times higher than in the rest of the world, including Guam, the Kii Peninsula of Japan, and Western New Guinea. The incidence in these areas has decreased since the 1960s; the cause remains unknown.

• #17 Azthena logo with the word Azthena

  https://www.news-medical.net/health/Motor-Neurone-Disease-Epidemiology.aspx

  Motor neurone disease affects about 2 in every 100,000 people each year in the UK and about 5,000 people are living with the disease at any given time. […] In the United States, about 5,600 individuals are diagnosed every year. The condition is slightly more common among men than women. […] For the majority of countries, the prevalence of motor neurone disease is similar. Among some areas of the world, however, an increased prevalence of the condition has been known, although this appears to be tailing off in recent decades. […] One area of increased incidence is the Kii peninsula of Japan where the cycad seed is used as a medicine. The ingestion or topical application of this seed has been linked to the development of motor neurone disease. Chamorro inhabitants from the island of Guam in the Pacific Ocean also develop a special form of motor neurone disease called Guamanian ALS-PD-dementia complex or lytico bodig. It has been suggested that this condition develops in these regions due to the use of cycad nut flour in the diet or the inclusion of bats in the diet that have eaten cycad nuts.

• #18 Macquarie University unveils MND surveillance centre in Wagga Wagga – ABC News

  https://www.abc.net.au/news/2025-02-22/australias-first-mnd-surveillance-centre-open-in-wagga-wagga/104966972

  Motor neurone disease (MND) is three times more common in the New South Wales Riverina region, according to a neurologist. […] Researchers from Macquarie University chose the area to establish Australia’s first MND surveillance centre to investigate causes of the disease. […] Neurologists have flagged the Riverina regional centre as a hot spot for the deadly neurodegenerative disease. […] Estimates vary but it’s probably at least three times more common in the Riverina, Macquarie University project lead and neurology professor Dominic Rowe said. […] The centre’s researchers will spend the next three years collecting data from patients across the region, including Griffith, Tumut and Leeton, to pinpoint the causes of the disease and why it is so prevalent in the Riverina. […] Professor Rowe said one of the aims of the surveillance unit was to end up with more accurate numbers of people with MND in the region, and the nation.

• #19 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  A new map has begun to build a picture of motor neuron disease (MND) in NSW, with the team at Australia’s first MND surveillance centre aiming to collect patient data to pinpoint the causes of the deadly neurodegenerative disease. […] Cluster: The NSW Riverina region has an unusually high incidence of MND, which experts say has likely links to the use of agricultural chemicals making their way into inland waterways. […] In that time, MND has increased as a cause of death in Australia by 250 per cent, up from one in 500 deaths to one in 200. […] We know MND cases are rising around the country, and we also seeing it more often in younger people, with an increase in patients being diagnosed in their forties when we used to see them in their fifties or sixties. […] Identifying clusters has long been stymied by the fact that MND is not a notifiable disease, Professor Rowe says.

• #20 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  ALS is the most common motor neuron disease in adults and the third most common neurodegenerative disease after Alzheimer’s disease and Parkinson’s disease. Worldwide the number of people who develop ALS yearly is estimated to be 1.9 people per 100,000 per year, while the number of people who have ALS at any given time is estimated to be about 4.5 people per 100,000. In Europe, the number of new cases a year is about 2.6 people per 100,000, while the number affected is 79 people per 100,000. The lifetime risk of developing ALS is 1:350 for European men and 1:400 for European women. Men have a higher risk mainly because spinal-onset ALS is more common in men than women. The number of those with ALS in the United States in 2015 was 5.2 people per 100,000, and was higher in whites, males, and people over 60 years old. The number of new cases is about 0.8 people per 100,000 per year in East Asia and about 0.7 people per 100,000 per year in South Asia. About 80% of ALS epidemiology studies have been conducted in Europe and the United States, mostly in people of northern European descent. There is not enough information to determine the rates of ALS in much of the world, including Africa, parts of Asia, India, Russia, and South America. There are several geographic clusters in the Western Pacific where the prevalence of ALS was reported to be 50-100 times higher than in the rest of the world, including Guam, the Kii Peninsula of Japan, and Western New Guinea. The incidence in these areas has decreased since the 1960s; the cause remains unknown.

• #21 Azthena logo with the word Azthena

  https://www.news-medical.net/health/Motor-Neurone-Disease-Epidemiology.aspx

  Motor neurone disease affects about 2 in every 100,000 people each year in the UK and about 5,000 people are living with the disease at any given time. […] In the United States, about 5,600 individuals are diagnosed every year. The condition is slightly more common among men than women. […] For the majority of countries, the prevalence of motor neurone disease is similar. Among some areas of the world, however, an increased prevalence of the condition has been known, although this appears to be tailing off in recent decades. […] One area of increased incidence is the Kii peninsula of Japan where the cycad seed is used as a medicine. The ingestion or topical application of this seed has been linked to the development of motor neurone disease. Chamorro inhabitants from the island of Guam in the Pacific Ocean also develop a special form of motor neurone disease called Guamanian ALS-PD-dementia complex or lytico bodig. It has been suggested that this condition develops in these regions due to the use of cycad nut flour in the diet or the inclusion of bats in the diet that have eaten cycad nuts.

• #22 Macquarie University unveils MND surveillance centre in Wagga Wagga – ABC News

  https://www.abc.net.au/news/2025-02-22/australias-first-mnd-surveillance-centre-open-in-wagga-wagga/104966972

  Motor neurone disease (MND) is three times more common in the New South Wales Riverina region, according to a neurologist. […] Researchers from Macquarie University chose the area to establish Australia’s first MND surveillance centre to investigate causes of the disease. […] Neurologists have flagged the Riverina regional centre as a hot spot for the deadly neurodegenerative disease. […] Estimates vary but it’s probably at least three times more common in the Riverina, Macquarie University project lead and neurology professor Dominic Rowe said. […] The centre’s researchers will spend the next three years collecting data from patients across the region, including Griffith, Tumut and Leeton, to pinpoint the causes of the disease and why it is so prevalent in the Riverina. […] Professor Rowe said one of the aims of the surveillance unit was to end up with more accurate numbers of people with MND in the region, and the nation.

• #23 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  A new map has begun to build a picture of motor neuron disease (MND) in NSW, with the team at Australia’s first MND surveillance centre aiming to collect patient data to pinpoint the causes of the deadly neurodegenerative disease. […] Cluster: The NSW Riverina region has an unusually high incidence of MND, which experts say has likely links to the use of agricultural chemicals making their way into inland waterways. […] In that time, MND has increased as a cause of death in Australia by 250 per cent, up from one in 500 deaths to one in 200. […] We know MND cases are rising around the country, and we also seeing it more often in younger people, with an increase in patients being diagnosed in their forties when we used to see them in their fifties or sixties. […] Identifying clusters has long been stymied by the fact that MND is not a notifiable disease, Professor Rowe says.

• #24 Incidence and lifetime risk of motor neuron disease in the United Kingdom: a population-based study

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3093130/

  To estimate the incidence and lifetime risk of motor neuron disease (MND) in a population-based sample in the United Kingdom. […] In the period 1990-2005, 830 new cases of MND were identified. Age-standardized incidence of MND was 2.6 per 100,000 persons per year in women and 3.9 in men. The lifetime risk of MND, adjusting for competing causes of death, was 1 in 472 (2.1 per 1000) in women and 1 in 350 (2.9 per 1000) in men. […] In this population-based database, we found that MND incidence is higher in men than women, peaking in both sexes at age 75-79. […] The estimated lifetime risk of developing MND was approximately 1 in 350 for men and 1 in 500 for women. […] The (unadjusted) lifetime risk of MND in the GPRD was similar to estimates from population-based studies in Ireland and Scotland, though higher than in the Italian registries. […] Incidence rates of MND in the GPRD were similar to those reported from previous prospective studies conducted in Europe, including population-based registries.

• #25 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  ALS is the most common motor neuron disease in adults and the third most common neurodegenerative disease after Alzheimer’s disease and Parkinson’s disease. Worldwide the number of people who develop ALS yearly is estimated to be 1.9 people per 100,000 per year, while the number of people who have ALS at any given time is estimated to be about 4.5 people per 100,000. In Europe, the number of new cases a year is about 2.6 people per 100,000, while the number affected is 79 people per 100,000. The lifetime risk of developing ALS is 1:350 for European men and 1:400 for European women. Men have a higher risk mainly because spinal-onset ALS is more common in men than women. The number of those with ALS in the United States in 2015 was 5.2 people per 100,000, and was higher in whites, males, and people over 60 years old. The number of new cases is about 0.8 people per 100,000 per year in East Asia and about 0.7 people per 100,000 per year in South Asia. About 80% of ALS epidemiology studies have been conducted in Europe and the United States, mostly in people of northern European descent. There is not enough information to determine the rates of ALS in much of the world, including Africa, parts of Asia, India, Russia, and South America. There are several geographic clusters in the Western Pacific where the prevalence of ALS was reported to be 50-100 times higher than in the rest of the world, including Guam, the Kii Peninsula of Japan, and Western New Guinea. The incidence in these areas has decreased since the 1960s; the cause remains unknown.

• #26 What is MND? | MND Association

  https://www.mndassociation.org/about-mnd/mnd-explained/what-is-mnd

  MND affects up to 5,000 adults in the UK at any one time. There is a 1 in 300 risk of getting MND across a lifetime. It can affect adults of any age, but is more likely to affect people over 50. […] As motor neurone disease is not common, general health and social care professionals may not see many cases. This means it is important to seek out specialists who have appropriate experience in its treatment and care usually with referral to neurological services.

• #27 Incidence and lifetime risk of motor neuron disease in the United Kingdom: a population-based study

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3093130/

  To estimate the incidence and lifetime risk of motor neuron disease (MND) in a population-based sample in the United Kingdom. […] In the period 1990-2005, 830 new cases of MND were identified. Age-standardized incidence of MND was 2.6 per 100,000 persons per year in women and 3.9 in men. The lifetime risk of MND, adjusting for competing causes of death, was 1 in 472 (2.1 per 1000) in women and 1 in 350 (2.9 per 1000) in men. […] In this population-based database, we found that MND incidence is higher in men than women, peaking in both sexes at age 75-79. […] The estimated lifetime risk of developing MND was approximately 1 in 350 for men and 1 in 500 for women. […] The (unadjusted) lifetime risk of MND in the GPRD was similar to estimates from population-based studies in Ireland and Scotland, though higher than in the Italian registries. […] Incidence rates of MND in the GPRD were similar to those reported from previous prospective studies conducted in Europe, including population-based registries.

• #28 Incidence of and risk factors for Motor Neurone Disease in UK women: a prospective study | BMC Neurology | Full Text

  https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-12-25

  Motor neuron disease (MND) is a severe neurodegenerative disease with largely unknown etiology. Most epidemiological studies are hampered by small sample sizes and/or the retrospective collection of information on behavioural and lifestyle factors. […] 1.3 million women from the UK Million Women Study, aged 56 years on average at recruitment, were followed up for incident and/or fatal MND using NHS hospital admission and mortality data. […] During follow-up for an average of 92 years, 752 women had a new diagnosis of MND. Age-specific rates increased with age, from 19 (95% CI 13 27) to 125 (95% CI 102 153) per 100,000 women aged 50-54 to 70-74, respectively, giving a cumulative risk of diagnosis with the disease of 174 per 1000 women between the ages of 50 and 75 years. […] MND incidence in UK women rises rapidly with age, and an estimated 1 in 575 women are likely to be affected between the ages of 50 and 75 years.

• #29 Motor Neurone Disease Information & Support | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/for-health-professionals-service-providers/overview-of-mnd-for-health-professionals

  Motor neurone disease (MND) is a fatal, progressive, degenerative, neurological condition. MND occurs in all countries of the world. The impact of ALS/MND on the community is usually measured by the incidence and prevalence of the disease. Worldwide the incidence of ALS/MND is 2 per 100,000 of total population, while the prevalence is around 6 per 100,000 of total population. Research has found that the incidence is higher in people aged over 50 years. Although classified as a rare disease based on its prevalence it is estimated that approximately 140,000 new cases are diagnosed worldwide each year. The lifetime risk of developing ALS/MND has been calculated to be 1/300. […] In Australia, on average, each day two people die from MND and two people are diagnosed with MND. A Deloitte Access Economics report commissioned by MND Australia in 2015 estimated that there were 2,094 Australians living with MND, of whom 60% were male and 40% female. The overall prevalence rate was estimated to be 8.7 per 100,000 Australians, or 1 in 11,434 Australians, with the highest prevalence rate reported in males aged between 75 and 84 years.

• #30 What is ALS/MND?

  https://www.als-mnd.org/what-is-alsmnd/

  MND is the widely used generic term in the United Kingdom, Australia and parts of Europe, and ALS is used more generically in the United States, Canada and South America. […] The impact on the community of ALS/MND is usually measured by the incidence and prevalence of the disease. Incidence is the number of new cases added in a defined period, usually a year. Prevalence is the number of cases existing at any point in time. The incidence of ALS/MND is 2 per 100,000 of total population, while the prevalence is around 6 per 100,000 of total population. Research has found that the incidence is higher in people aged over 50 years. […] Although classified as a rare disease based on its prevalence, ALS/MND in fact quite common. There are approximately 140,000 new cases diagnosed worldwide each year. That is 384 new cases every day!

• #31 Motor neuron disease: The last 12 months

  https://www1.racgp.org.au/ajgp/2022/may/the-last-12-months-of-motor-neuron-disease

  Motor neuron disease (MND) is a rare disease. Its incidence is approximately 12 per 100,000 person years and it is more common in men. Its prevalence is thought to be between five and six people per 100,000 population. Therefore, GPs may expect to care for at least one patient with MND during their career. The mean age of onset is 58 years. […] MND is a rare disease. Its incidence is approximately 12 per 100,000 person years and it is more common in men. Its prevalence is thought to be between five and six people per 100,000 population. Therefore, GPs may expect to care for at least one patient with MND during their career. The mean age of onset is 58 years.

• #32 Basic facts about MND – MND NZ

  https://mnd.org.nz/about-mnd/what-is-mnd/basic-facts-about-mnd/

  Motor neurone disease (MND) is the name given to a group of closely related disorders that affect the motor neurones. […] The incidence rate of MND in NZ is higher than the rest of the world – researchers are trying to find out why so we can change it. […] MND can affect adults at any age but most people diagnosed with MND are over the age of 40, with the highest incidence occurring between the ages of 50 and 70. […] In New Zealand an average of 144 people are diagnosed with MND every year about 3 in every 100,000 people. Internationally, the incidence of MND is much lower (approximately 2 in every 100,000 people). […] Approximately 400 people in New Zealand are living with MND. […] Each year MND causes the deaths of an average of 120 people in New Zealand. […] We don’t know why the rate of MND in New Zealand is higher than the international average.

• #33 Amyotrophic Lateral Sclerosis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1170097-overview

  Approximately 5600 people in the United States are diagnosed with ALS each year. The annual incidence is 2-3 per 100,000 population; this is about equal to that of multiple sclerosis and 5 times higher than that of Huntington disease. It is estimated that as many as 18,000 Americans may have ALS at any given time. […] The lifetime risk for developing ALS for individuals aged 18 years has been estimated to be 1 in 350 for men and 1 in 420 for women. […] Age-adjusted European incidence data are similar to those for members of the US population who are of European descent. […] Most variability between countries has been attributed to different age composition or differences in case finding. […] More recent data, however, suggest that ethnic variability in disease incidence exists that may not be explained entirely by differences in case finding, with lower incidence in nonwhites or individuals of mixed ethnicity.

• #34 Incidence of and risk factors for Motor Neurone Disease in UK women: a prospective study | BMC Neurology | Full Text

  https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-12-25

  Motor neuron disease (MND) is a severe neurodegenerative disease with largely unknown etiology. Most epidemiological studies are hampered by small sample sizes and/or the retrospective collection of information on behavioural and lifestyle factors. […] 1.3 million women from the UK Million Women Study, aged 56 years on average at recruitment, were followed up for incident and/or fatal MND using NHS hospital admission and mortality data. […] During follow-up for an average of 92 years, 752 women had a new diagnosis of MND. Age-specific rates increased with age, from 19 (95% CI 13 27) to 125 (95% CI 102 153) per 100,000 women aged 50-54 to 70-74, respectively, giving a cumulative risk of diagnosis with the disease of 174 per 1000 women between the ages of 50 and 75 years. […] MND incidence in UK women rises rapidly with age, and an estimated 1 in 575 women are likely to be affected between the ages of 50 and 75 years.

• #35 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  People of all races and ethnic backgrounds may be affected by ALS, but it is more common in whites than in Africans, Asians, or Hispanics. In the United States in 2015, the prevalence of ALS in whites was 5.4 people per 100,000, while the prevalence in blacks was 2.3 people per 100,000. The Midwest had the highest prevalence of the four US Census regions with 5.5 people per 100,000, followed by the Northeast (5.1), the South (4.7), and the West (4.4). The Midwest and Northeast likely had a higher prevalence of ALS because they have a higher proportion of whites than the South and West. […] ALS can affect people at any age, but the peak incidence is between 50 and 75 years and decreases dramatically after 80 years. The reason for the decreased incidence in the elderly is unclear. One thought is that people who survive into their 80s may not be genetically susceptible to developing ALS; alternatively, ALS in the elderly might go undiagnosed because of comorbidities (other diseases they have), difficulty seeing a neurologist, or dying quickly from an aggressive form of ALS. In the United States in 2015, the lowest prevalence was in the 18-39 age group, while the highest prevalence was in the 70-79 age group. Sporadic ALS usually starts around the ages of 58 to 63 years, while genetic ALS starts earlier, usually around 47 to 52 years. The number of ALS cases worldwide is projected to increase from 222,801 in 2015 to 376,674 in 2040, an increase of 69%. This will largely be due to the aging of the world’s population, especially in developing countries.

• #36 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  A new map has begun to build a picture of motor neuron disease (MND) in NSW, with the team at Australia’s first MND surveillance centre aiming to collect patient data to pinpoint the causes of the deadly neurodegenerative disease. […] Cluster: The NSW Riverina region has an unusually high incidence of MND, which experts say has likely links to the use of agricultural chemicals making their way into inland waterways. […] In that time, MND has increased as a cause of death in Australia by 250 per cent, up from one in 500 deaths to one in 200. […] We know MND cases are rising around the country, and we also seeing it more often in younger people, with an increase in patients being diagnosed in their forties when we used to see them in their fifties or sixties. […] Identifying clusters has long been stymied by the fact that MND is not a notifiable disease, Professor Rowe says.

• #37 Motor Neuron Disease – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK560774/

  Motor neuron disease (MND) has been shown to approach 2 to 3 per 100,000 population, while a lower frequency (less than 1 per 100,000) of ALS has been demonstrated in the South and East Asian community. […] Approximately 10 to 15 percent of individuals with ALS have familial disease. […] The estimated lifetime risk of sporadic ALS is one in 400. […] While bulbar onset ALS has been shown to be more common in females, spinal onset illness has been shown to be common in males. […] Progressive muscular atrophy (PMA) represents 2.5 to 11 percent of cases with MND. With an incidence of 0.02 per 100,000 population, it is a much rarer form of the disease.

• #38 Motor Neurone Disease (MND): Causes and Treatment | Doctor

  https://patient.info/doctor/motor-neurone-disease-pro

  Motor neurone disease (MND) is a rare but devastating neurodegenerative condition that affects the brain and spinal cord, leading to progressive paralysis and eventual death. […] The incidence is 2-4/100,000 per annum, with onset typically in the sixth and seventh decades. […] The male to female ratio is 2:1. […] About 5-10% of cases are inherited. […] Male sex, increasing age and hereditary disposition are the main risk factors.

• #39 Pathology of Motor Neuron Disorders: Definition, Etiology, Epidemiology

  https://emedicine.medscape.com/article/2111360-overview

  Amyotrophic lateral sclerosis (ALS) develops with a uniform frequency in major Western countries; the annual incidence is about 2 per 100,000 population. The estimated prevalence is 5 per 100,000 in the United States; approximately 30,000 Americans currently have the disease. Epidemiologic data suggest that smoking may be an established risk factor for sporadic ALS. The peak age of onset is between 55 and 75 years. Men are affected more frequently than women; however, this sex discrepancy is not as pronounced in familial cases. […] The incidence of primary lateral sclerosis (PLS) is difficult to determine, both because it occurs rarely and because there is a significant overlap with ALS. […] The prevalence of hereditary spastic paraparesis (HSP) varies from study to study as a result of the marked differences in the classifications used and their included diagnoses. In Ireland, the prevalence of pure autosomal dominant HSP is 1.17/100,000 population, whereas in southeast Norway, the HSP prevalence was estimated to be 7.4/100,000 population (pure autosomal dominant HSP, 4.5/100,000; complex autosomal dominant HSP, 1.0/100,000; and autosomal recessive HSP, 1.3/100,000).

• #40 Motor Neuron Disease – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK560774/

  Motor neuron disease (MND) has been shown to approach 2 to 3 per 100,000 population, while a lower frequency (less than 1 per 100,000) of ALS has been demonstrated in the South and East Asian community. […] Approximately 10 to 15 percent of individuals with ALS have familial disease. […] The estimated lifetime risk of sporadic ALS is one in 400. […] While bulbar onset ALS has been shown to be more common in females, spinal onset illness has been shown to be common in males. […] Progressive muscular atrophy (PMA) represents 2.5 to 11 percent of cases with MND. With an incidence of 0.02 per 100,000 population, it is a much rarer form of the disease.

• #41 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  ALS is the most common motor neuron disease in adults and the third most common neurodegenerative disease after Alzheimer’s disease and Parkinson’s disease. Worldwide the number of people who develop ALS yearly is estimated to be 1.9 people per 100,000 per year, while the number of people who have ALS at any given time is estimated to be about 4.5 people per 100,000. In Europe, the number of new cases a year is about 2.6 people per 100,000, while the number affected is 79 people per 100,000. The lifetime risk of developing ALS is 1:350 for European men and 1:400 for European women. Men have a higher risk mainly because spinal-onset ALS is more common in men than women. The number of those with ALS in the United States in 2015 was 5.2 people per 100,000, and was higher in whites, males, and people over 60 years old. The number of new cases is about 0.8 people per 100,000 per year in East Asia and about 0.7 people per 100,000 per year in South Asia. About 80% of ALS epidemiology studies have been conducted in Europe and the United States, mostly in people of northern European descent. There is not enough information to determine the rates of ALS in much of the world, including Africa, parts of Asia, India, Russia, and South America. There are several geographic clusters in the Western Pacific where the prevalence of ALS was reported to be 50-100 times higher than in the rest of the world, including Guam, the Kii Peninsula of Japan, and Western New Guinea. The incidence in these areas has decreased since the 1960s; the cause remains unknown.

• #42 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  People of all races and ethnic backgrounds may be affected by ALS, but it is more common in whites than in Africans, Asians, or Hispanics. In the United States in 2015, the prevalence of ALS in whites was 5.4 people per 100,000, while the prevalence in blacks was 2.3 people per 100,000. The Midwest had the highest prevalence of the four US Census regions with 5.5 people per 100,000, followed by the Northeast (5.1), the South (4.7), and the West (4.4). The Midwest and Northeast likely had a higher prevalence of ALS because they have a higher proportion of whites than the South and West. […] ALS can affect people at any age, but the peak incidence is between 50 and 75 years and decreases dramatically after 80 years. The reason for the decreased incidence in the elderly is unclear. One thought is that people who survive into their 80s may not be genetically susceptible to developing ALS; alternatively, ALS in the elderly might go undiagnosed because of comorbidities (other diseases they have), difficulty seeing a neurologist, or dying quickly from an aggressive form of ALS. In the United States in 2015, the lowest prevalence was in the 18-39 age group, while the highest prevalence was in the 70-79 age group. Sporadic ALS usually starts around the ages of 58 to 63 years, while genetic ALS starts earlier, usually around 47 to 52 years. The number of ALS cases worldwide is projected to increase from 222,801 in 2015 to 376,674 in 2040, an increase of 69%. This will largely be due to the aging of the world’s population, especially in developing countries.

• #43 Motor Neuron Disease – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK560774/

  Motor neuron disease (MND) has been shown to approach 2 to 3 per 100,000 population, while a lower frequency (less than 1 per 100,000) of ALS has been demonstrated in the South and East Asian community. […] Approximately 10 to 15 percent of individuals with ALS have familial disease. […] The estimated lifetime risk of sporadic ALS is one in 400. […] While bulbar onset ALS has been shown to be more common in females, spinal onset illness has been shown to be common in males. […] Progressive muscular atrophy (PMA) represents 2.5 to 11 percent of cases with MND. With an incidence of 0.02 per 100,000 population, it is a much rarer form of the disease.

• #44 Amyotrophic Lateral Sclerosis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1170097-overview

  Approximately 5600 people in the United States are diagnosed with ALS each year. The annual incidence is 2-3 per 100,000 population; this is about equal to that of multiple sclerosis and 5 times higher than that of Huntington disease. It is estimated that as many as 18,000 Americans may have ALS at any given time. […] The lifetime risk for developing ALS for individuals aged 18 years has been estimated to be 1 in 350 for men and 1 in 420 for women. […] Age-adjusted European incidence data are similar to those for members of the US population who are of European descent. […] Most variability between countries has been attributed to different age composition or differences in case finding. […] More recent data, however, suggest that ethnic variability in disease incidence exists that may not be explained entirely by differences in case finding, with lower incidence in nonwhites or individuals of mixed ethnicity.

• #45 Amyotrophic Lateral Sclerosis: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1170097-overview

  Finland has one of the highest rates of ALS in the world; the disease occurs in the Finnish population nearly twice as frequently as it does in other populations of European ancestry. […] In the United States, ALS affects whites more often than nonwhites; the white-to-nonwhite ratio is 1.6:1. […] Small population clusters have been identified that have higher rates of ALS. […] For most of the lifespan, the incidence of ALS is higher in men than in women, with an overall male-to-female ratio of 1.5-2:1. […] Onset of ALS may occur from the teenage years to the late 80s; the incidence rises with increasing age until approximately age 75-80 years. Mean age of onset of sporadic ALS is 65 years; mean age of onset of familial ALS ranges from 46-55 years.

• #46 Motor neuron disease/ALS | UK DRI

  https://www.ukdri.ac.uk/conditions/motor-neuron-diseaseals

  Motor neuron disease (MND) is the general name that’s given to a group of illnesses which can affect nerves called motor neurons in the brain and spinal cord. […] It’s estimated that MND affects around 5,000 adults in the UK at any one time. The MND Association estimates that six people are diagnosed with the disease every day in the UK. […] The most common subtype of MND is amyotrophic lateral sclerosis (ALS), which contributes approximately 90% of cases. […] MND/ALS is an important area of research and at any given time there are a number of trials actively recruiting volunteers to take part. […] The discovery that MND/ALS and frontotemporal dementia, diseases with distinct clinical symptoms, share the most common genetic cause – a faulty C9orf72 gene – has helped build our knowledge of both conditions.

• #47 ALS vs Other Motor Neuron Diseases: What are the Differences?

  https://www.targetals.org/2022/01/04/als-and-other-motor-neuron-diseases-whats-the-difference/

  ALS Amyotrophic Lateral Sclerosismay be the best known and most common motor neuron disease (MND), but its not the only one. […] Motor neuron diseases are a category of neurologic disease that involve progressive degeneration of motor neurons. MNDs destroy motor neurons, which are the cells that control skeletal muscle activity such as walking, breathing, speaking, and swallowing. All MNDs cause muscle weakness that worsens over time, and many are fatal. […] MNDs are more common in men, and onset typically begins between age 50 and 70. The cause is usually unknown. About 5% to 7% of people who have a motor neuron disease have a hereditary type. […] The issue isnt motor neuron disease vs. ALS. After all, ALS is a motor neuron diseaseits the most common. But the MND category encompasses an array of diseases, including, among others, progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy and spinal muscular atrophy.

• #48 Motor Neuron Disease – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK560774/

  Motor neuron disease (MND) has been shown to approach 2 to 3 per 100,000 population, while a lower frequency (less than 1 per 100,000) of ALS has been demonstrated in the South and East Asian community. […] Approximately 10 to 15 percent of individuals with ALS have familial disease. […] The estimated lifetime risk of sporadic ALS is one in 400. […] While bulbar onset ALS has been shown to be more common in females, spinal onset illness has been shown to be common in males. […] Progressive muscular atrophy (PMA) represents 2.5 to 11 percent of cases with MND. With an incidence of 0.02 per 100,000 population, it is a much rarer form of the disease.

• #49 Pathology of Motor Neuron Disorders: Definition, Etiology, Epidemiology

  https://emedicine.medscape.com/article/2111360-overview

  Amyotrophic lateral sclerosis (ALS) develops with a uniform frequency in major Western countries; the annual incidence is about 2 per 100,000 population. The estimated prevalence is 5 per 100,000 in the United States; approximately 30,000 Americans currently have the disease. Epidemiologic data suggest that smoking may be an established risk factor for sporadic ALS. The peak age of onset is between 55 and 75 years. Men are affected more frequently than women; however, this sex discrepancy is not as pronounced in familial cases. […] The incidence of primary lateral sclerosis (PLS) is difficult to determine, both because it occurs rarely and because there is a significant overlap with ALS. […] The prevalence of hereditary spastic paraparesis (HSP) varies from study to study as a result of the marked differences in the classifications used and their included diagnoses. In Ireland, the prevalence of pure autosomal dominant HSP is 1.17/100,000 population, whereas in southeast Norway, the HSP prevalence was estimated to be 7.4/100,000 population (pure autosomal dominant HSP, 4.5/100,000; complex autosomal dominant HSP, 1.0/100,000; and autosomal recessive HSP, 1.3/100,000).

• #50 Pathology of Motor Neuron Disorders: Definition, Etiology, Epidemiology

  https://emedicine.medscape.com/article/2111360-overview

  Amyotrophic lateral sclerosis (ALS) develops with a uniform frequency in major Western countries; the annual incidence is about 2 per 100,000 population. The estimated prevalence is 5 per 100,000 in the United States; approximately 30,000 Americans currently have the disease. Epidemiologic data suggest that smoking may be an established risk factor for sporadic ALS. The peak age of onset is between 55 and 75 years. Men are affected more frequently than women; however, this sex discrepancy is not as pronounced in familial cases. […] The incidence of primary lateral sclerosis (PLS) is difficult to determine, both because it occurs rarely and because there is a significant overlap with ALS. […] The prevalence of hereditary spastic paraparesis (HSP) varies from study to study as a result of the marked differences in the classifications used and their included diagnoses. In Ireland, the prevalence of pure autosomal dominant HSP is 1.17/100,000 population, whereas in southeast Norway, the HSP prevalence was estimated to be 7.4/100,000 population (pure autosomal dominant HSP, 4.5/100,000; complex autosomal dominant HSP, 1.0/100,000; and autosomal recessive HSP, 1.3/100,000).

• #51 Motor neuron diseases – Wikipedia

  https://en.wikipedia.org/wiki/Motor_neuron_diseases

  Motor neuron diseases (MNDs) are a group of rare neurodegenerative disorders that selectively affect motor neurons, the cells which control voluntary muscles of the body. […] Motor neuron diseases affect both children and adults. […] Most of these diseases seem to occur randomly without known causes, but some forms are inherited. […] Currently, there are no approved treatments for the majority of motor neuron disorders, and care is mostly symptomatic. […] In adults, men are more commonly affected than women. […] Differential diagnosis can be challenging due to the number of overlapping symptoms, shared between several motor neuron diseases. […] The term „motor neuron disease” has varying meanings in different countries. […] Sporadic or acquired MNDs occur in patients with no family history of degenerative motor neuron disease.

• #52 Motor Neurone Disease (MND): Causes and Treatment | Doctor

  https://patient.info/doctor/motor-neurone-disease-pro

  Motor neurone disease (MND) is a rare but devastating neurodegenerative condition that affects the brain and spinal cord, leading to progressive paralysis and eventual death. […] The incidence is 2-4/100,000 per annum, with onset typically in the sixth and seventh decades. […] The male to female ratio is 2:1. […] About 5-10% of cases are inherited. […] Male sex, increasing age and hereditary disposition are the main risk factors.

• #53 Motor neurone disease (MND) | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/motor-neurone-disease

  Motor neurone disease (MND) is still incurable, but not untreatable many symptoms can be managed. […] People with MND live better and longer under the care of a multidisciplinary team. […] Life expectancy after diagnosis is one to five years, with 10 per cent of people with MND living 10 years or more. […] The causes of MND are unknown, but worldwide research includes studies on: exposure to viruses, exposure to certain toxins and chemicals, genetic factors, inflammation and damage to neurons caused by an immune system response, nerve growth factors, growth, repair and ageing of motor neurons. […] Familial (hereditary) MND accounts for about five to 10 percent of cases. […] The majority of cases, 90 to 95 per cent, are sporadic. […] MND is still incurable, but it is not untreatable, as many symptoms can be managed. […] Research has shown that people live better and longer under the care of a multidisciplinary team.

• #54 Motor neuron disease – wikidoc

  https://www.wikidoc.org/index.php/Motor_neuron_disease

  The incidence of MND is approximately 15 out of 100,000 people. Men have a slightly higher incidence rate than women. Approximately 5,600 cases are diagnosed in the U.S. every year. By far the greatest risk factor is age, with symptoms typically presenting between the ages of 50-70. Cases under the age of 50 years are called „young onset MND”, whilst incidence rates appear to tail off after the age of 85. […] Tentative environmental risk factors identified so far include: exposure to severe electrical shock leading to coma, having served in the first Gulf War, and playing professional football (soccer). However, these findings have not been firmly identified and more research is needed. […] There are three „hot spots” of MND in the world. One is in the Kii peninsula of Japan, one amongst a tribal population in Papua New Guinea. Chamorro inhabitants from the island of Guam in the Pacific Ocean have an increased risk of developing a form of MND known as Guamanian ALS-PD-dementia complex or „lytico bodig”, although the incidence rate has declined over the last 50 years and the average age of onset has increased.

• #55 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  Because of this, the data is fragmented, locked away in the medical records of individual patients and their treating doctors. […] Professor Rowe has received a $1 million grant from the NSW Government to set up the country’s first MND surveillance centre at Macquarie University, turning patient and environmental information into detailed maps. […] Being able to map MND cases is vital to communities like ours, because people need to know there is an increased risk. […] MND can occur anywhere, but our observation is there are clusters far above the expected incidence and prevalence in areas around rivers and lakes, and as the heat map grows, we’re expecting it to reflect that, Professor Rowe says. […] There are multiple potential triggers for this disease, but one of the big ones is agricultural chemicals.

• #56 Incidence of and risk factors for Motor Neurone Disease in UK women: a prospective study | BMC Neurology | Full Text

  https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-12-25

  There was no significant trend in risk of MND with socio-economic status, education, parity, height, or alcohol use. […] We found a highly significant trend of decreasing risk with increasing BMI at recruitment, an observation which has not been reported before. […] Ever smoking was associated with a modest 20% increased risk of MND compared to never-smokers.

• #57 Is the incidence of motor neuron disease higher in French military personnel?

  https://www.santepubliquefrance.fr/import/is-the-incidence-of-motor-neuron-disease-higher-in-french-military-personnel

  Objective: previous studies, mostly from the United States, showed an increased risk of motor neuron disease (MND) in military personnel. […] We compared MND incidence rates in French military personnel to that in the general population. […] on average, 25 cases/year were newly diagnosed with MND among military personnel aged 50 years. The incidence rate was higher for male military personnel compared to the general population (RR = 1.16; 95% CI = 1.05-1.29) but was similar for women (RR = 1.02; 95% CI = 0.79-1.31). […] MND incidence was 16% higher in French male military personnel, in agreement with studies from other countries.

• #58 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  Previous work with agricultural chemicals is often a link between people diagnosed with MND, as is taking part in certain water sports. […] In the past 30 years, I’ve treated dozens of patients with MND in the Riverina. I’m watching the number of new cases rise every year, and I’m seeing them get younger. […] We already know the likely causes of this disease, and now we need to work towards preventing it and stopping more families from losing their loved ones.

• #59 Incidence of and risk factors for Motor Neurone Disease in UK women: a prospective study | BMC Neurology | Full Text

  https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-12-25

  There was no significant trend in risk of MND with socio-economic status, education, parity, height, or alcohol use. […] We found a highly significant trend of decreasing risk with increasing BMI at recruitment, an observation which has not been reported before. […] Ever smoking was associated with a modest 20% increased risk of MND compared to never-smokers.

• #60 235 Epidemiology of motor neurone disease in wales | Journal of Neurology, Neurosurgery & Psychiatry

  https://jnnp.bmj.com/content/90/12/e58.2

  National registries of patients with rare disease such as motor neurone disease (MND) can lead to more reliable epidemiological estimates. […] The South Wales MND Network records clinical data on all patients referred to the specialist MND clinics in south Wales and diagnosed with MND. […] There were 202 people with MND on the prevalence date, of whom 122 (60.4%) were male. The median time from onset to diagnosis was 1.4 years (interquartile range 0.92.4 years). Prevalence in the region was 8.8 per 100,000. This varied by local health board, with the highest prevalence seen in Aneurin Bevan University Health Board (12.1 per 100,000), and the lowest in Abertawe Bro Morgannwg University Health Board (7.0 per 100,000). Male:female ratio was similar for all local health boards (2=3.6, p=0.46). […] Our estimates of prevalence are in keeping with other European countries. Future investigation into variation in MND prevalence may provide insights into underlying mechanisms of disease.

• #61 The epidemiology of MND – MND Research Blog

  https://mndresearch.blog/2021/11/04/the-epidemiology-of-mnd/

  Epidemiology is the study of the frequency, pattern, causes and risk factors of health-related states and events (not just diseases) in specified populations such as neighbourhoods, countries or globally. […] Currently there is no nationwide register that records clinical information about people with MND, and the true numbers of people living with the disease in the UK is not known. The MND Register of England, Wales and Northern Ireland aims to collect information about every person with MND in the UK. […] Researchers in Australia have carried out a study to provide incidence and prevalence data for MND in South Australia, to help outline the impact the disease has upon the state. The Global Burden of Disease project recently estimated the MND all-age global prevalence to be 4-5 per 100,000 persons.

• #62 Motor Neurone Disease Information & Support | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/for-health-professionals-service-providers/overview-of-mnd-for-health-professionals

  Mortality rates due to MND are relatively high in all age groups. The mortality rate is estimated to be 3.14 per 100,000 across the entire population, which was equivalent to 752 deaths due to MND in 2015. Approximately 55% of deaths occur in males. […] The global incidence of ALS varies between 1 and 2.6 cases per 100,000 people per year, with the average age of onset ranging from 54 to 67 years old. The prevalence of ALS increases with age, reaching 1/5000 among people aged 70-79 years old. […] The incidence of ALS is about 2 per 100,000 person-years, and the prevalence is about 5 per 100,000 persons. […] The Australian MND Registry was established in 2004 as a means to facilitate the collection and analysis of MND patient data in Australia. The goal of the registry is to improve patient care through continuous evaluation of patient management and associated outcomes, and by contributing to research.

• #63 WED 225 Changing epidemiology of motor neurone disease in scotland | Journal of Neurology, Neurosurgery & Psychiatry

  https://jnnp.bmj.com/content/89/10/A33.1

  Clinical Audit Research and Evaluation for Motor Neurone Disease (CARE-MND) (formerly the Scottish MND Register) is an electronic platform for prospective, population-based research in Scotland. We present the results of recent epidemiological analyses. […] Crude prevalence of MND in Scotland is 7.617.64/100,000 of the population. Direct age standardised incidence in 2015 was 3.42/100,000 (95% CI: 2.99 to 3.91); in 2016, 2.89/100,000 (95% CI: 2.50 to 3.34). […] Our data suggest a changing landscape of MND in Scotland, with a rise in incidence by 36%. This could be attributed to improved neurological services in Scotland. Incidence is also 67% higher than Northern European estimates, which perhaps reflects our robust ascertainment methods. However, further work using population CARE-MND data aims to determine if genetic or environmental variables account for these findings.

• #64 Motor Neurone Disease Information & Support | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/for-health-professionals-service-providers/overview-of-mnd-for-health-professionals

  The Sporadic ALS Australia Systems Genomics Consortium (SALSA-SGC) was established in 2015 funded by the MND Research Australia Ice Bucket Challenge Grant. The consortium is led by Professor Naomi Wray, from the University of Queensland and Associate Professor Ian Blair, from Macquarie University, NSW. SALSA collects consistent clinical data and biological samples across clinics in Australia to underpin future research based on biological samples, including genomics.

• #65 The epidemiology of MND – MND Research Blog

  https://mndresearch.blog/2021/11/04/the-epidemiology-of-mnd/

  A total of 256 MND patients were identified between 2017-2019 from the Australian Motor Neurone Disease Registry. Based on the 2016 population of 1,676,653 persons, the estimated prevalence was 6.79 per 100,000 persons. These results indicate that the prevalence and incidence of MND in South Australia are high compared to global estimates. […] The incidence of MND in people of Bangladeshi, Indian and Pakistani ethnicity has not previously been reported. […] The current lack of treatment for MND is largely attributed to the fact that the cause, or causes, of most individuals disease is not known. […] Data collection in ALSrisc is ongoing but the data so far shows that average age at diagnosis is 65.9 years and the average delay in diagnosis is 1.4 years. The characteristics of ALSrisc cases are generally comparable to those of all ALS patients diagnosed in Stockholm during the same period according to the MND Quality Registry.

• #66

  https://repository.rcsi.com/articles/thesis/Motor_neuron_disease_in_Ireland_epidemiology_risk_factors_and_prognostic_indicators/10815236

  This thesis describes a series of studies examining aspects of the epidemiology of motor neuron disease (MND). The Republic of Ireland has a unique database of all patients diagnosed with MND which allows detailed study of MND epidemiology over time. Approximately 200-240 patients in Ireland have MND at any one time and 80 patients are diagnosed on a yearly basis. Data on over 1000 patients has been collected since 1993. […] The first part of this study aimed to update and reanalyse the Irish MND population data. In particular it was of interest to compare current incidence and prevalence data from a study published in 1999 to examine for changing population trends after introduction of new standards of care in nutritional and respiratory management of MND. […] We discovered relatively stable epidemiology in our MND population over the last decade with identical figures produced by the NI MND register. It would appear that new standards of care have not yet impacted life expectancy in the Irish MND population but further study is required in the future.

• #67 Macquarie University unveils MND surveillance centre in Wagga Wagga – ABC News

  https://www.abc.net.au/news/2025-02-22/australias-first-mnd-surveillance-centre-open-in-wagga-wagga/104966972

  There is currently no data in Australia that systematically collects who has motor neurone disease, he said. […] Professor Rowe said the project aimed to back up current hypotheses about what causes MND. […] We strongly suspect, and in fact there’s increasing evidence not just from Australia but from around the world, that this disease is caused by triggers in the environment, he said. […] If we understand what’s causing motor neurone disease from the environment, potentially we can prevent it. […] Dr Jude said exposure to chemicals was common within the region as there were many farming communities. […] We think that the exposure to those environmental factors, or chemicals, or water quality, it’s very likely that the exposure happens a long time before the symptoms of MND start, he said. […] So really trying to nut out what the specific issues are is complicated because we’re dealing with a problem that’s coming later.

• #68 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  Because of this, the data is fragmented, locked away in the medical records of individual patients and their treating doctors. […] Professor Rowe has received a $1 million grant from the NSW Government to set up the country’s first MND surveillance centre at Macquarie University, turning patient and environmental information into detailed maps. […] Being able to map MND cases is vital to communities like ours, because people need to know there is an increased risk. […] MND can occur anywhere, but our observation is there are clusters far above the expected incidence and prevalence in areas around rivers and lakes, and as the heat map grows, we’re expecting it to reflect that, Professor Rowe says. […] There are multiple potential triggers for this disease, but one of the big ones is agricultural chemicals.

• #69 Macquarie University unveils MND surveillance centre in Wagga Wagga – ABC News

  https://www.abc.net.au/news/2025-02-22/australias-first-mnd-surveillance-centre-open-in-wagga-wagga/104966972

  There is currently no data in Australia that systematically collects who has motor neurone disease, he said. […] Professor Rowe said the project aimed to back up current hypotheses about what causes MND. […] We strongly suspect, and in fact there’s increasing evidence not just from Australia but from around the world, that this disease is caused by triggers in the environment, he said. […] If we understand what’s causing motor neurone disease from the environment, potentially we can prevent it. […] Dr Jude said exposure to chemicals was common within the region as there were many farming communities. […] We think that the exposure to those environmental factors, or chemicals, or water quality, it’s very likely that the exposure happens a long time before the symptoms of MND start, he said. […] So really trying to nut out what the specific issues are is complicated because we’re dealing with a problem that’s coming later.

• #70 Accuracy of routinely-collected healthcare data for identifying motor neurone disease cases: A systematic review | PLOS One

  https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0172639

  Motor neurone disease (MND) is a rare neurodegenerative condition, with poorly understood aetiology. […] We systematically evaluated the accuracy of such datasets in identifying MND cases. […] Thirteen eligible studies provided 13 estimates of PPV and five estimates of sensitivity. […] Diagnostic accuracy of routinely-collected health datasets is likely to be sufficient for identifying cases of MND in large-scale prospective epidemiological studies in high income country settings. […] Primary care datasets, particularly from countries with a widely-accessible national healthcare system, are potentially valuable data sources warranting further investigation. […] In this study we aimed to systematically review all studies that investigated the accuracy of routinely-collected health datasets in identifying MND cases by comparing coded information to a reference standard.

• #71 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  Because of this, the data is fragmented, locked away in the medical records of individual patients and their treating doctors. […] Professor Rowe has received a $1 million grant from the NSW Government to set up the country’s first MND surveillance centre at Macquarie University, turning patient and environmental information into detailed maps. […] Being able to map MND cases is vital to communities like ours, because people need to know there is an increased risk. […] MND can occur anywhere, but our observation is there are clusters far above the expected incidence and prevalence in areas around rivers and lakes, and as the heat map grows, we’re expecting it to reflect that, Professor Rowe says. […] There are multiple potential triggers for this disease, but one of the big ones is agricultural chemicals.

• #72 235 Epidemiology of motor neurone disease in wales | Journal of Neurology, Neurosurgery & Psychiatry

  https://jnnp.bmj.com/content/90/12/e58.2

  National registries of patients with rare disease such as motor neurone disease (MND) can lead to more reliable epidemiological estimates. […] The South Wales MND Network records clinical data on all patients referred to the specialist MND clinics in south Wales and diagnosed with MND. […] There were 202 people with MND on the prevalence date, of whom 122 (60.4%) were male. The median time from onset to diagnosis was 1.4 years (interquartile range 0.92.4 years). Prevalence in the region was 8.8 per 100,000. This varied by local health board, with the highest prevalence seen in Aneurin Bevan University Health Board (12.1 per 100,000), and the lowest in Abertawe Bro Morgannwg University Health Board (7.0 per 100,000). Male:female ratio was similar for all local health boards (2=3.6, p=0.46). […] Our estimates of prevalence are in keeping with other European countries. Future investigation into variation in MND prevalence may provide insights into underlying mechanisms of disease.

• #73 Accuracy of routinely-collected healthcare data for identifying motor neurone disease cases: A systematic review | PLOS One

  https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0172639

  The accuracy of MND coding in these routinely-collected datasets therefore needs to be understood. […] There were thirteen estimates of PPV, eight based on hospital admissions data, one on hospital admissions and outpatient data combined, three on death data and one on primary care data. […] Reported PPVs ranged from 55%-92%; more than half of these (including over half of the total number of patients studied) were 80%. […] In the nine studies of hospital data, PPVs ranged from 55-92%. […] Primary care data appears to be a promising source of MND case ascertainment for prospective studies based in countries with universally-accessible primary health care. […] In general, PPV and sensitivity of routinely-collected health data in identifying MND cases are likely to be sufficient for many epidemiological studies investigating the determinants of MND.

• #74 The epidemiology of MND – MND Research Blog

  https://mndresearch.blog/2021/11/04/the-epidemiology-of-mnd/

  A total of 256 MND patients were identified between 2017-2019 from the Australian Motor Neurone Disease Registry. Based on the 2016 population of 1,676,653 persons, the estimated prevalence was 6.79 per 100,000 persons. These results indicate that the prevalence and incidence of MND in South Australia are high compared to global estimates. […] The incidence of MND in people of Bangladeshi, Indian and Pakistani ethnicity has not previously been reported. […] The current lack of treatment for MND is largely attributed to the fact that the cause, or causes, of most individuals disease is not known. […] Data collection in ALSrisc is ongoing but the data so far shows that average age at diagnosis is 65.9 years and the average delay in diagnosis is 1.4 years. The characteristics of ALSrisc cases are generally comparable to those of all ALS patients diagnosed in Stockholm during the same period according to the MND Quality Registry.

• #75 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  Because of this, the data is fragmented, locked away in the medical records of individual patients and their treating doctors. […] Professor Rowe has received a $1 million grant from the NSW Government to set up the country’s first MND surveillance centre at Macquarie University, turning patient and environmental information into detailed maps. […] Being able to map MND cases is vital to communities like ours, because people need to know there is an increased risk. […] MND can occur anywhere, but our observation is there are clusters far above the expected incidence and prevalence in areas around rivers and lakes, and as the heat map grows, we’re expecting it to reflect that, Professor Rowe says. […] There are multiple potential triggers for this disease, but one of the big ones is agricultural chemicals.

• #76 Azthena logo with the word Azthena

  https://www.news-medical.net/condition/Motor-Neurone-Disease

  Motor neurone disease (MND) are a group of neurological disorders that selectively affect motor neurones, the cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body. […] Motor neurone disease is a rare condition of the nervous system that leads to loss of muscle control. […] A funding boost of more than 78 million will help UCL scientists working to develop a potential treatment for motor neurone disease, for which there is currently no cure and which affects 5,000 people each year in the UK. […] Research into the life-shortening neurological condition motor neurone disease (MND) will receive a major boost through the formation of a new data catalyst led by Health Data Research UK (HDR UK) and Dementia Platforms UK (DPUK). […] Scientists have developed a new machine learning model for the discovery of genetic risk factors for diseases such as Motor Neurone Disease (MND).

• #77 Motor neuron disease/ALS | UK DRI

  https://www.ukdri.ac.uk/conditions/motor-neuron-diseaseals

  In addition, UK DRI’s Director Prof Siddharthan Chandran and UK DRI Co-investigator Prof Suvankar Pal are leading a pioneering MND-SMART clinical trial platform – currently the largest MND trial in the UK with 800 people at 22 sites in all four nations. This enables several combinations of existing drugs to be tested simultaneously to reduce the duration of trials and increase the chances of effective treatments being approved for MND/ALS.

• #78 Macquarie University unveils MND surveillance centre in Wagga Wagga – ABC News

  https://www.abc.net.au/news/2025-02-22/australias-first-mnd-surveillance-centre-open-in-wagga-wagga/104966972

  There is currently no data in Australia that systematically collects who has motor neurone disease, he said. […] Professor Rowe said the project aimed to back up current hypotheses about what causes MND. […] We strongly suspect, and in fact there’s increasing evidence not just from Australia but from around the world, that this disease is caused by triggers in the environment, he said. […] If we understand what’s causing motor neurone disease from the environment, potentially we can prevent it. […] Dr Jude said exposure to chemicals was common within the region as there were many farming communities. […] We think that the exposure to those environmental factors, or chemicals, or water quality, it’s very likely that the exposure happens a long time before the symptoms of MND start, he said. […] So really trying to nut out what the specific issues are is complicated because we’re dealing with a problem that’s coming later.

• #79

  https://link.springer.com/article/10.1007/s00415-024-12219-1

  During the study period spanning from 2002 to 2021, there was an escalation in the incidence rate of MND in Sweden, rising from 3.5-3.7 to over 4 per 100,000 person-years. […] A notable portion of this increase might be attributed to demographic shifts, given that the mean age in Sweden has steadily risen over the last two decades, from 40.6 in 2002 to 41.6 in 2021. […] The influence of genetic and environmental factors remains to be determined.

• #80 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  A new map has begun to build a picture of motor neuron disease (MND) in NSW, with the team at Australia’s first MND surveillance centre aiming to collect patient data to pinpoint the causes of the deadly neurodegenerative disease. […] Cluster: The NSW Riverina region has an unusually high incidence of MND, which experts say has likely links to the use of agricultural chemicals making their way into inland waterways. […] In that time, MND has increased as a cause of death in Australia by 250 per cent, up from one in 500 deaths to one in 200. […] We know MND cases are rising around the country, and we also seeing it more often in younger people, with an increase in patients being diagnosed in their forties when we used to see them in their fifties or sixties. […] Identifying clusters has long been stymied by the fact that MND is not a notifiable disease, Professor Rowe says.

• #81

  https://link.springer.com/article/10.1007/s00415-024-12219-1

  Motor neuron diseases (MND), with amyotrophic lateral sclerosis constituting most cases, are rare conditions of unknown etiology. There have been reports of an increase in incidence during the latter half of the twentieth century in various Western countries, including Sweden. This study provides updated data on the incidence of MND in Sweden during the last 20 years. […] In the early 2000s, there was a crude incidence rate of 3.5-3.7 per 100,000 person-years, which then increased to 4.0-4.6 from 2008 onward. […] The incidence rate of MND in Sweden now seems to have surpassed 4 cases per 100,000 person-years. This is higher when compared to both other European countries and previous Swedish studies. […] Our findings showed an average crude incidence rate of 4.1 per 100,000 person-years for MND, during 2002-2021 in Sweden: 3.5 for females and 4.7 for males. This is a higher estimate compared to the previously reported European average of 2.0-2.3 per 100,000 person-years for ALS.

• #82 WED 225 Changing epidemiology of motor neurone disease in scotland | Journal of Neurology, Neurosurgery & Psychiatry

  https://jnnp.bmj.com/content/89/10/A33.1

  Clinical Audit Research and Evaluation for Motor Neurone Disease (CARE-MND) (formerly the Scottish MND Register) is an electronic platform for prospective, population-based research in Scotland. We present the results of recent epidemiological analyses. […] Crude prevalence of MND in Scotland is 7.617.64/100,000 of the population. Direct age standardised incidence in 2015 was 3.42/100,000 (95% CI: 2.99 to 3.91); in 2016, 2.89/100,000 (95% CI: 2.50 to 3.34). […] Our data suggest a changing landscape of MND in Scotland, with a rise in incidence by 36%. This could be attributed to improved neurological services in Scotland. Incidence is also 67% higher than Northern European estimates, which perhaps reflects our robust ascertainment methods. However, further work using population CARE-MND data aims to determine if genetic or environmental variables account for these findings.

• #83 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  A new map has begun to build a picture of motor neuron disease (MND) in NSW, with the team at Australia’s first MND surveillance centre aiming to collect patient data to pinpoint the causes of the deadly neurodegenerative disease. […] Cluster: The NSW Riverina region has an unusually high incidence of MND, which experts say has likely links to the use of agricultural chemicals making their way into inland waterways. […] In that time, MND has increased as a cause of death in Australia by 250 per cent, up from one in 500 deaths to one in 200. […] We know MND cases are rising around the country, and we also seeing it more often in younger people, with an increase in patients being diagnosed in their forties when we used to see them in their fifties or sixties. […] Identifying clusters has long been stymied by the fact that MND is not a notifiable disease, Professor Rowe says.

• #84 Motor Neuron Disease Research Centre | Macquarie University

  https://www.mq.edu.au/research/research-centres-groups-and-facilities/centres/motor-neuron-disease

  Motor neuron disease is a terminal, rapidly progressing neurological disease. Every year in Australia, around 800 people are diagnosed with this disease. […] Over the past 30 years, there has been an escalation in the rate of MND in Australia.

• #85 ALS – Wikipedia

  https://en.wikipedia.org/wiki/ALS

  People of all races and ethnic backgrounds may be affected by ALS, but it is more common in whites than in Africans, Asians, or Hispanics. In the United States in 2015, the prevalence of ALS in whites was 5.4 people per 100,000, while the prevalence in blacks was 2.3 people per 100,000. The Midwest had the highest prevalence of the four US Census regions with 5.5 people per 100,000, followed by the Northeast (5.1), the South (4.7), and the West (4.4). The Midwest and Northeast likely had a higher prevalence of ALS because they have a higher proportion of whites than the South and West. […] ALS can affect people at any age, but the peak incidence is between 50 and 75 years and decreases dramatically after 80 years. The reason for the decreased incidence in the elderly is unclear. One thought is that people who survive into their 80s may not be genetically susceptible to developing ALS; alternatively, ALS in the elderly might go undiagnosed because of comorbidities (other diseases they have), difficulty seeing a neurologist, or dying quickly from an aggressive form of ALS. In the United States in 2015, the lowest prevalence was in the 18-39 age group, while the highest prevalence was in the 70-79 age group. Sporadic ALS usually starts around the ages of 58 to 63 years, while genetic ALS starts earlier, usually around 47 to 52 years. The number of ALS cases worldwide is projected to increase from 222,801 in 2015 to 376,674 in 2040, an increase of 69%. This will largely be due to the aging of the world’s population, especially in developing countries.

• #86 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  A new map has begun to build a picture of motor neuron disease (MND) in NSW, with the team at Australia’s first MND surveillance centre aiming to collect patient data to pinpoint the causes of the deadly neurodegenerative disease. […] Cluster: The NSW Riverina region has an unusually high incidence of MND, which experts say has likely links to the use of agricultural chemicals making their way into inland waterways. […] In that time, MND has increased as a cause of death in Australia by 250 per cent, up from one in 500 deaths to one in 200. […] We know MND cases are rising around the country, and we also seeing it more often in younger people, with an increase in patients being diagnosed in their forties when we used to see them in their fifties or sixties. […] Identifying clusters has long been stymied by the fact that MND is not a notifiable disease, Professor Rowe says.

• #87 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  Previous work with agricultural chemicals is often a link between people diagnosed with MND, as is taking part in certain water sports. […] In the past 30 years, I’ve treated dozens of patients with MND in the Riverina. I’m watching the number of new cases rise every year, and I’m seeing them get younger. […] We already know the likely causes of this disease, and now we need to work towards preventing it and stopping more families from losing their loved ones.

• #88

  https://link.springer.com/article/10.1007/s00415-024-12219-1

  During the study period spanning from 2002 to 2021, there was an escalation in the incidence rate of MND in Sweden, rising from 3.5-3.7 to over 4 per 100,000 person-years. […] A notable portion of this increase might be attributed to demographic shifts, given that the mean age in Sweden has steadily risen over the last two decades, from 40.6 in 2002 to 41.6 in 2021. […] The influence of genetic and environmental factors remains to be determined.

• #89 WED 225 Changing epidemiology of motor neurone disease in scotland | Journal of Neurology, Neurosurgery & Psychiatry

  https://jnnp.bmj.com/content/89/10/A33.1

  Clinical Audit Research and Evaluation for Motor Neurone Disease (CARE-MND) (formerly the Scottish MND Register) is an electronic platform for prospective, population-based research in Scotland. We present the results of recent epidemiological analyses. […] Crude prevalence of MND in Scotland is 7.617.64/100,000 of the population. Direct age standardised incidence in 2015 was 3.42/100,000 (95% CI: 2.99 to 3.91); in 2016, 2.89/100,000 (95% CI: 2.50 to 3.34). […] Our data suggest a changing landscape of MND in Scotland, with a rise in incidence by 36%. This could be attributed to improved neurological services in Scotland. Incidence is also 67% higher than Northern European estimates, which perhaps reflects our robust ascertainment methods. However, further work using population CARE-MND data aims to determine if genetic or environmental variables account for these findings.

• #90 Australian-first map to track motor neuron disease clusters | The Lighthouse

  https://lighthouse.mq.edu.au/article/february-2025/australian-first-map-to-track-motor-neuron-disease-clusters

  Because of this, the data is fragmented, locked away in the medical records of individual patients and their treating doctors. […] Professor Rowe has received a $1 million grant from the NSW Government to set up the country’s first MND surveillance centre at Macquarie University, turning patient and environmental information into detailed maps. […] Being able to map MND cases is vital to communities like ours, because people need to know there is an increased risk. […] MND can occur anywhere, but our observation is there are clusters far above the expected incidence and prevalence in areas around rivers and lakes, and as the heat map grows, we’re expecting it to reflect that, Professor Rowe says. […] There are multiple potential triggers for this disease, but one of the big ones is agricultural chemicals.

• #91

  https://link.springer.com/article/10.1007/s00415-024-12219-1

  During the study period spanning from 2002 to 2021, there was an escalation in the incidence rate of MND in Sweden, rising from 3.5-3.7 to over 4 per 100,000 person-years. […] A notable portion of this increase might be attributed to demographic shifts, given that the mean age in Sweden has steadily risen over the last two decades, from 40.6 in 2002 to 41.6 in 2021. […] The influence of genetic and environmental factors remains to be determined.

• #92 WED 225 Changing epidemiology of motor neurone disease in scotland | Journal of Neurology, Neurosurgery & Psychiatry

  https://jnnp.bmj.com/content/89/10/A33.1

  Clinical Audit Research and Evaluation for Motor Neurone Disease (CARE-MND) (formerly the Scottish MND Register) is an electronic platform for prospective, population-based research in Scotland. We present the results of recent epidemiological analyses. […] Crude prevalence of MND in Scotland is 7.617.64/100,000 of the population. Direct age standardised incidence in 2015 was 3.42/100,000 (95% CI: 2.99 to 3.91); in 2016, 2.89/100,000 (95% CI: 2.50 to 3.34). […] Our data suggest a changing landscape of MND in Scotland, with a rise in incidence by 36%. This could be attributed to improved neurological services in Scotland. Incidence is also 67% higher than Northern European estimates, which perhaps reflects our robust ascertainment methods. However, further work using population CARE-MND data aims to determine if genetic or environmental variables account for these findings.

• #93 WED 225 Changing epidemiology of motor neurone disease in scotland | Journal of Neurology, Neurosurgery & Psychiatry

  https://jnnp.bmj.com/content/89/10/A33.1

  Clinical Audit Research and Evaluation for Motor Neurone Disease (CARE-MND) (formerly the Scottish MND Register) is an electronic platform for prospective, population-based research in Scotland. We present the results of recent epidemiological analyses. […] Crude prevalence of MND in Scotland is 7.617.64/100,000 of the population. Direct age standardised incidence in 2015 was 3.42/100,000 (95% CI: 2.99 to 3.91); in 2016, 2.89/100,000 (95% CI: 2.50 to 3.34). […] Our data suggest a changing landscape of MND in Scotland, with a rise in incidence by 36%. This could be attributed to improved neurological services in Scotland. Incidence is also 67% higher than Northern European estimates, which perhaps reflects our robust ascertainment methods. However, further work using population CARE-MND data aims to determine if genetic or environmental variables account for these findings.

• #94 Motor Neurone Disease Information & Support | MND Australia | MND Australia

  https://www.mndaustralia.org.au/mnd-connect/for-health-professionals-service-providers/overview-of-mnd-for-health-professionals

  Motor neurone disease (MND) is a fatal, progressive, degenerative, neurological condition. MND occurs in all countries of the world. The impact of ALS/MND on the community is usually measured by the incidence and prevalence of the disease. Worldwide the incidence of ALS/MND is 2 per 100,000 of total population, while the prevalence is around 6 per 100,000 of total population. Research has found that the incidence is higher in people aged over 50 years. Although classified as a rare disease based on its prevalence it is estimated that approximately 140,000 new cases are diagnosed worldwide each year. The lifetime risk of developing ALS/MND has been calculated to be 1/300. […] In Australia, on average, each day two people die from MND and two people are diagnosed with MND. A Deloitte Access Economics report commissioned by MND Australia in 2015 estimated that there were 2,094 Australians living with MND, of whom 60% were male and 40% female. The overall prevalence rate was estimated to be 8.7 per 100,000 Australians, or 1 in 11,434 Australians, with the highest prevalence rate reported in males aged between 75 and 84 years.

• #95 Demographic trends of motor neurone… | NIHR Open Research

  https://openresearch.nihr.ac.uk/articles/4-79

  Motor Neurone Disease (MND) is a neurodegenerative condition affecting motor neurons in spinal cord and brainstem, leading to a reduced life expectancy. This study describes demographic trends in MND-associated mortality in the United States over a 20-year period. […] Data was extracted from the Centers for Disease Control and Prevention Wide-Ranging OnLine Data for Epidemiologic Research underlying cause of death database. All death certificates from 1999-2020 with MND (G12.2) recorded as the cause of mortality were extracted. Annual MND-associated crude mortality rates (CMR) and age-adjusted mortality rates (AAMR) per 100,000 persons with 95% confidence intervals (CI) were calculated. Joinpoint regression was used to calculate the annual trends in MND-associated mortality by calculating the annual percentage change.

• #96 What is MND? | MND Association

  https://www.mndassociation.org/about-mnd/mnd-explained/what-is-mnd

  MND affects up to 5,000 adults in the UK at any one time. There is a 1 in 300 risk of getting MND across a lifetime. It can affect adults of any age, but is more likely to affect people over 50. […] As motor neurone disease is not common, general health and social care professionals may not see many cases. This means it is important to seek out specialists who have appropriate experience in its treatment and care usually with referral to neurological services.

• #97 Supportive & palliative interventions in motor neurone disease: what we know from current literature? – Benjamin Cheng – Annals of Palliative Medicine

  https://apm.amegroups.org/article/view/17160/html

  Although there is no cure for motor neurone disease (MND), the advent of supportive interventions including multidisciplinary care (MDC) has improved treatment interventions and enhanced quality of life (QOL) for MND patients and their carers. […] The multidisciplinary clinic typically involves a neurologist, MND nurse, physiotherapist, occupational and speech therapists. […] MDC approach is the mainstay for the management of patients with chronic neurological conditions such as multiple sclerosis, stroke, acquired brain injury, and MND. […] MDC is reported to prolong survival from 7 to 24 months, possibly further enhanced in patients with bulbar disease, while reducing the risk of death by 45% at 5 years. […] Both AAN and EFNS recommend MDC care setting for patients with MND, with the current EFNS guidelines recognizing the benefit of MDC approach in improving survival, reducing medical complications, and improving the QOL of patients and their caregivers.

• #98 Supportive & palliative interventions in motor neurone disease: what we know from current literature? – Benjamin Cheng – Annals of Palliative Medicine

  https://apm.amegroups.org/article/view/17160/html

  Although there is no cure for motor neurone disease (MND), the advent of supportive interventions including multidisciplinary care (MDC) has improved treatment interventions and enhanced quality of life (QOL) for MND patients and their carers. […] The multidisciplinary clinic typically involves a neurologist, MND nurse, physiotherapist, occupational and speech therapists. […] MDC approach is the mainstay for the management of patients with chronic neurological conditions such as multiple sclerosis, stroke, acquired brain injury, and MND. […] MDC is reported to prolong survival from 7 to 24 months, possibly further enhanced in patients with bulbar disease, while reducing the risk of death by 45% at 5 years. […] Both AAN and EFNS recommend MDC care setting for patients with MND, with the current EFNS guidelines recognizing the benefit of MDC approach in improving survival, reducing medical complications, and improving the QOL of patients and their caregivers.

• #99 Motor Neurone Disease (MND) Market – Global Market – Industry Trends and Forecast to 2028 | Data Bridge Market Research

  https://www.databridgemarketresearch.com/reports/global-motor-neurone-disease-mnd-market?srsltid=AfmBOor3bwKfCi7juIXfA-wA-0HZ_lgYpAbl5rECoX41CtbYra-HQESi

  Motor neurone disease (MND) market is expected to gain market growth in the forecast period of 2021-2028. Data Bridge Market Research analyses the market to account to grow at a CAGR of 7.0% in the above mentioned forecast period. […] The rise in the prevalence of motor neurone disease and growing geriatric population are the major factors influencing the market growth rate. Furthermore, growing demand for effective and advanced treatment, rising healthcare expenditure, growing government funding and rising initiatives by public and private organisations to spread awareness about the rare disease and its available treatment are the factors that will expand the motor neurone disease (MND) market. […] Motor neurone disease (MND) market also provides you with detailed market analysis for patient analysis, prognosis and cures. Prevalence, incidence, mortality, adherence rates are some of the data variables that are available in the report. Direct or indirect impact analysis of epidemiology to market growth are analysed to create a more robust and cohort multivariate statistical model for forecasting the market in the growth period.

• #100 National Trends in Motor Neurone Disease-Associated Mortality from 1999-2020 | British Geriatrics Society

  https://www.bgs.org.uk/national-trends-in-motor-neurone-disease-associated-mortality-from-1999-2020

  This national study demonstrates that there were a significant number of MND-associated deaths in the United States, with higher rates associated with certain patient demographics. The knowledge of these trends facilitates the design of appropriate services in areas of higher need, allowing for the introduction of pathways that support more suitable care and enhanced quality of life.

• #101 The epidemiology of MND – MND Research Blog

  https://mndresearch.blog/2021/11/04/the-epidemiology-of-mnd/

  A total of 256 MND patients were identified between 2017-2019 from the Australian Motor Neurone Disease Registry. Based on the 2016 population of 1,676,653 persons, the estimated prevalence was 6.79 per 100,000 persons. These results indicate that the prevalence and incidence of MND in South Australia are high compared to global estimates. […] The incidence of MND in people of Bangladeshi, Indian and Pakistani ethnicity has not previously been reported. […] The current lack of treatment for MND is largely attributed to the fact that the cause, or causes, of most individuals disease is not known. […] Data collection in ALSrisc is ongoing but the data so far shows that average age at diagnosis is 65.9 years and the average delay in diagnosis is 1.4 years. The characteristics of ALSrisc cases are generally comparable to those of all ALS patients diagnosed in Stockholm during the same period according to the MND Quality Registry.

• #102 Motor neuron disease/ALS | UK DRI

  https://www.ukdri.ac.uk/conditions/motor-neuron-diseaseals

  In addition, UK DRI’s Director Prof Siddharthan Chandran and UK DRI Co-investigator Prof Suvankar Pal are leading a pioneering MND-SMART clinical trial platform – currently the largest MND trial in the UK with 800 people at 22 sites in all four nations. This enables several combinations of existing drugs to be tested simultaneously to reduce the duration of trials and increase the chances of effective treatments being approved for MND/ALS.

• #103 Brain Awareness Week 2021: Tackling Motor Neurone Disease through research – News & Events | Trinity College Dublin

  https://www.tcd.ie/news_events/articles/brain-awareness-week-2021-tackling-motor-neurone-disease-through-research/

  Within the Academic Unit of Neurology at Trinity, the main research focus is on Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neurone Disease (MND). ALS/MND is a fatal neurodegenerative disease that strikes in midlife and kills one person every 2 days in Ireland. […] Their epidemiology research has shown that genetic factors contribute to half of the risk of developing ALS, and they are working with the International Project MinE Consortium (www.projectmine.com), and colleagues in South America to identify which combinations of genes increase or reduce the risk. […] Interestingly, they are also studying whether different ancestral populations have different manifestations of ALS.

• #104 Clinical spectrum of motor neuron disease – Research at UMC Utrecht

  https://research.umcutrecht.nl/research-groups/clinical-spectrum-of-motor-neuron-disease/

  Motor neuron disease (MND) are a collection of disorder that primarily lead to progressive weakness and/or spasticity. […] The goal is to better understand what drives this phenotypic heterogeneity and developing better diagnostic tools and provide patients with a more accurate prognosis by studying the natural history, This will also lead to the identification of disease specific biomarkers of disease progression, which in turn can be used as outcome measures in clinical trials. […] Serving the ultimate goal of providing better treatments to patients with MND.

• #105 Oxford Motor Neuron Disease Centre — Nuffield Department of Clinical Neurosciences

  https://www.ndcn.ox.ac.uk/research/oxford-motor-neuron-disease-centre

  Motor neurons are cells which initiate and control voluntary movement. Amyotrophic lateral sclerosis (ALS), the commonest form of motor neuron disease (MND) and the third commonest form of neurodegenerative disease after Alzheimers and Parkinsons, is currently incurable. […] Associate Professor Thompson has expertise in advanced proteomics and epidemiology focused on understanding risk factors and modifiers in ALS. […] We are one of the major centres for international as well as UK ALS therapeutic trials. All patients attending the Oxford Motor Neuron Disease Clinic are also given the opportunity to engage in other vital research, through participation in genetic and biomarker studies.

• #106 Macquarie University unveils MND surveillance centre in Wagga Wagga – ABC News

  https://www.abc.net.au/news/2025-02-22/australias-first-mnd-surveillance-centre-open-in-wagga-wagga/104966972

  There is currently no data in Australia that systematically collects who has motor neurone disease, he said. […] Professor Rowe said the project aimed to back up current hypotheses about what causes MND. […] We strongly suspect, and in fact there’s increasing evidence not just from Australia but from around the world, that this disease is caused by triggers in the environment, he said. […] If we understand what’s causing motor neurone disease from the environment, potentially we can prevent it. […] Dr Jude said exposure to chemicals was common within the region as there were many farming communities. […] We think that the exposure to those environmental factors, or chemicals, or water quality, it’s very likely that the exposure happens a long time before the symptoms of MND start, he said. […] So really trying to nut out what the specific issues are is complicated because we’re dealing with a problem that’s coming later.

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