Materiały źródłowe

• #1 Idiopathic Hypersomnia – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK585065/

  Idiopathic hypersomnia (IH) is a rare chronic sleep disorder introduced by Bedrich Roth in Prague in 1956. […] Idiopathic hypersomnia is considered a disorder of neurological origin, classified as a central disorder of hypersomnolence; others include narcolepsy, type 1 and type 2, and Kleine-Levin syndrome. […] Although central hypersomnia is considered a continuum, the rate of its subtypes differs. IH has the lowest rate compared to narcolepsy type 1 and type 2 (approximately 82%, 13%, and 5%, respectively). […] The prevalence of IH increased in the last decade by 32% (from 7.8 to 10.3 per 100,000 persons) in both men and women equally.

• #2 Idiopathic Hypersomnia – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK585065/

  Idiopathic hypersomnia (IH) is a rare chronic sleep disorder introduced by Bedrich Roth in Prague in 1956. […] Idiopathic hypersomnia is considered a disorder of neurological origin, classified as a central disorder of hypersomnolence; others include narcolepsy, type 1 and type 2, and Kleine-Levin syndrome. […] Although central hypersomnia is considered a continuum, the rate of its subtypes differs. IH has the lowest rate compared to narcolepsy type 1 and type 2 (approximately 82%, 13%, and 5%, respectively). […] The prevalence of IH increased in the last decade by 32% (from 7.8 to 10.3 per 100,000 persons) in both men and women equally.

• #3 Idiopathic Hypersomnia | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/145574

  Idiopathic hypersomnia (IH) is a rare chronic sleep disorder introduced by Bedrich Roth in Prague in 1956. […] Idiopathic hypersomnia is considered a disorder of neurological origin, classified as a central disorder of hypersomnolence; others include narcolepsy, type 1 and type 2, and Kleine-Levin syndrome. […] IH has the lowest rate compared to narcolepsy type 1 and type 2 (approximately 82%, 13%, and 5%, respectively). […] Approximately one-third of cases have a positive family history, with family members having IH or other central disorders of hypersomnolence such as narcolepsy. […] The prevalence of IH increased in the last decade by 32% (from 7.8 to 10.3 per 100,000 persons) in both men and women equally.

• #4 Idiopathic hypersomnia – UpToDate

  https://www.uptodate.com/contents/idiopathic-hypersomnia/print

  Idiopathic hypersomnia is a central disorder of hypersomnolence, characterized by at least three months of daily periods of irrepressible need to sleep, or daytime lapses into sleep or drowsiness. […] The prevalence of idiopathic hypersomnia in the general population is unknown, in part because laboratory-based polysomnography and other assessments that would be necessary to rule out other causes of excessive daytime sleepiness have not been feasible in large numbers of unselected, representative subjects from the community. […] Based largely on sleep center referrals or large insurance claims databases, idiopathic hypersomnia appears to be significantly less common than narcolepsy, with a prevalence of approximately 20 to 100 cases per million people. […] One study estimated a much higher prevalence of probable idiopathic hypersomnia (1.5 percent) based on nocturnal polysomnograms and multiple sleep latency tests in a population-based sample of working adults in the Wisconsin Sleep Study. […] Some but not all reports have suggested females are affected more commonly than males.

• #5 Idiopathic hypersomnia | MedLink Neurology

  https://www.medlink.com/articles/idiopathic-hypersomnia

  The prevalence of idiopathic hypersomnia is difficult to estimate due to the relatively nonspecific nature of symptoms. […] In the general population the about 1 of 50,000 to 1 of 5000 individuals are estimated to have idiopathic hypersomnia. […] Among individuals presenting to a sleep center for excessive daytime sleepiness, 10% to 29% of individuals are estimated to have idiopathic hypersomnia. […] Evaluation of the prevalence of idiopathic hypersomnia in the general population is difficult due to the limited number of patients with this condition and the difficulty of making a definitive diagnosis. […] Despite the limited nature of epidemiological data, the prevalence of patients with idiopathic hypersomnia compared to narcolepsy provides some indication of overall prevalence. […] Integrating these findings into a meta-analysis exploring the epidemiology, diagnosis, pathophysiology, and treatment of idiopathic hypersomnia suggested that the prevalence of idiopathic hypersomnia in the adult population is between 1 in 5000 and 1 in 50,000. […] Clinically, approximately 10% to 29% of individuals referred to a sleep center for excessive daytime sleepiness ultimately receive a diagnosis of idiopathic hypersomnia.

• #6 Idiopathic hypersomnia – Wikipedia

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

  A more precise estimate „is complicated by a lack of clear biologic markers” and a lack of „unambiguous diagnostic criteria.” […] Because of the rarity of IH, research into the condition is limited „Patients are rare, researchers and scientists involved in the field are few and research findings are therefore scarce.” […] „In Europe and in North America there is now a public health concern about helping patients and families affected by these rare diseases. Due to the complexity of the disease, they often experience difficulties to be diagnosed and often face social and professional consequences.”

• #7 Primary Hypersomnia: Practice Essentials, Background, Etiology

  https://emedicine.medscape.com/article/291699-overview

  While the rates of excessive daytime sleepiness complaints in the general US population are between 0.5% and 5% of adults (in surveys without a specific consideration of causes/diagnoses), idiopathic hypersomnia (IH) is diagnosed in about 5%10% of individuals who are self-referred to a sleep clinic with a chief complaint of daytime sleepiness. A precise estimation of idiopathic hypersomnia prevalence is complicated by a lack of clear biologic markers or unambiguous diagnostic criteria. As a result, the reported prevalence rates of IH vary broadly. […] A 2023 study reported a much lower prevalence rate, estimating the rate of IH in US adults to be 32.12 per 100,000 persons in 2019, 35.71 per 100,000 persons in 2020, and 37.03 per 100,000 persons in 2021. […] IH prevalence varies between males and females. In the Wisconsin Sleep Cohort, the estimate prevalence of IH was 3.8% among both males and females, although female predominance was found in some studies. Approximately 33%66% of idiopathic hypersomnia cases appear to be familial.

• #8 Idiopathic hypersomnia – Hypersomnia Foundation

  https://www.hypersomniafoundation.org/ih/

  Idiopathic hypersomnia (IH) is a long-lasting (chronic) sleep disorder of the brain (neurologic disorder). Idiopathic means doctors don’t know what causes it. […] It’s hard to know how many people have IH. Some researchers have estimated 1 in every 50,000 people have IH. Other researchers have estimated 1 in every 3,000 people have IH. […] A few studies of people with IH have reported that the likelihood of IH going away on its own (the remission rate) is 10% to 33% (1 to 3 in every 10 people). However, because the cause of IH isn’t known and diagnosis can be unclear, some or all people whose IH went away might just have been initially misdiagnosed with IH. They may have actually had other conditions that were causing their excessive daytime sleepiness. […] Having IH can greatly affect daily life: Waking up is usually very hard, especially for people who have IH with long sleep. They often need multiple alarms and morning rituals to wake up for school or work. The amount and timing of needed sleep can limit daily activities. IH can cause problems with thinking, working, and socializing. People with IH may have trouble doing their jobs, staying in school, having romantic relationships, and fully engaging with their friends and loved ones.

• #9 Idiopathic hypersomnia – UpToDate

  https://www.uptodate.com/contents/idiopathic-hypersomnia/print

  Idiopathic hypersomnia is a central disorder of hypersomnolence, characterized by at least three months of daily periods of irrepressible need to sleep, or daytime lapses into sleep or drowsiness. […] The prevalence of idiopathic hypersomnia in the general population is unknown, in part because laboratory-based polysomnography and other assessments that would be necessary to rule out other causes of excessive daytime sleepiness have not been feasible in large numbers of unselected, representative subjects from the community. […] Based largely on sleep center referrals or large insurance claims databases, idiopathic hypersomnia appears to be significantly less common than narcolepsy, with a prevalence of approximately 20 to 100 cases per million people. […] One study estimated a much higher prevalence of probable idiopathic hypersomnia (1.5 percent) based on nocturnal polysomnograms and multiple sleep latency tests in a population-based sample of working adults in the Wisconsin Sleep Study. […] Some but not all reports have suggested females are affected more commonly than males.

• #10 Idiopathic hypersomnia – UpToDate

  https://www.uptodate.com/contents/idiopathic-hypersomnia/print

  Idiopathic hypersomnia is a central disorder of hypersomnolence, characterized by at least three months of daily periods of irrepressible need to sleep, or daytime lapses into sleep or drowsiness. […] The prevalence of idiopathic hypersomnia in the general population is unknown, in part because laboratory-based polysomnography and other assessments that would be necessary to rule out other causes of excessive daytime sleepiness have not been feasible in large numbers of unselected, representative subjects from the community. […] Based largely on sleep center referrals or large insurance claims databases, idiopathic hypersomnia appears to be significantly less common than narcolepsy, with a prevalence of approximately 20 to 100 cases per million people. […] One study estimated a much higher prevalence of probable idiopathic hypersomnia (1.5 percent) based on nocturnal polysomnograms and multiple sleep latency tests in a population-based sample of working adults in the Wisconsin Sleep Study. […] Some but not all reports have suggested females are affected more commonly than males.

• #11 Prevalence and Course of Idiopathic Hypersomnia in the Wisconsin Sleep Cohort Study – PubMed

  https://pubmed.ncbi.nlm.nih.gov/38165322/

  Idiopathic hypersomnia (IH) is a CNS disorder of hypersomnolence of unknown etiology. Due to the requirement for objective sleep testing to diagnose the disorder, there are currently no population-based estimates of the prevalence of IH nor data regarding the longitudinal course of IH in naturalistic settings. […] From 792 cohort study participants with available polysomnography and multiple sleep latency test data, 12 cases with probable IH were identified resulting in an estimated prevalence of IH of 1.5% (95% CI 0.7-2.5,p0.0001). […] These results demonstrate IH is more common in the working population than generally assumed with a prevalence on par with other common neurologic and psychiatric conditions. Further efforts to identify and diagnose those impaired by unexplained daytime somnolence may help clarify the causes of IH and the mechanisms underlying symptomatic remission.

• #12 The melanopsin-mediated pupil response is reduced in idiopathic hypersomnia with long sleep time | Scientific Reports

  https://www.nature.com/articles/s41598-022-13041-3

  Idiopathic hypersomnia (IH), characterized by an excessive day-time sleepiness, a prolonged total sleep time on 24 h and/or a reduced sleep latency, affects 1 in 2000 individuals from the general population. […] IH is underdiagnosed and often inaccurately treated despite colossal social, professional and personal impacts. […] The prevalence of IH is of 1 in 2000 in general population and is more common in females. […] IH is underdiagnosed and often inaccurately treated despite colossal social, professional and personal impacts. […] The polysomnographic recording confirmed the diagnostic of IH with prolonged sleep time and the absence of other sleep comorbidities. […] The relative PIPR was significantly lower in individuals with IH as compared to controls, indicating a lower melanopsin response associated with IH.

• #13 Orphanet: Idiopathic hypersomnia

  https://www.orpha.net/en/disease/detail/33208

  A rare neurologic disease characterized by an excessive daytime sleepiness with long and unrefreshing naps, and/or prolonged and undisturbed nocturnal sleep, impaired daytime alertness, and/or sleep inertia (ie, great difficulty in waking up after sleep) and where other causes have been excluded. […] The prevalence estimates were initially based on the proportion of patients with idiopathic hypersomnia (IH) over those with narcolepsy in the sleep medicine population. The consensus currently estimates prevalence of IH in the range of 0.002%-0.010% in the general population. A higher frequency in women is reported. […] IH appears to be familial; however, there is no information on inheritance or penetrance.

• #14 The melanopsin-mediated pupil response is reduced in idiopathic hypersomnia with long sleep time | Scientific Reports

  https://www.nature.com/articles/s41598-022-13041-3

  Idiopathic hypersomnia (IH), characterized by an excessive day-time sleepiness, a prolonged total sleep time on 24 h and/or a reduced sleep latency, affects 1 in 2000 individuals from the general population. […] IH is underdiagnosed and often inaccurately treated despite colossal social, professional and personal impacts. […] The prevalence of IH is of 1 in 2000 in general population and is more common in females. […] IH is underdiagnosed and often inaccurately treated despite colossal social, professional and personal impacts. […] The polysomnographic recording confirmed the diagnostic of IH with prolonged sleep time and the absence of other sleep comorbidities. […] The relative PIPR was significantly lower in individuals with IH as compared to controls, indicating a lower melanopsin response associated with IH.

• #15 Idiopathic hypersomnia – Wikipedia

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

  Typically, the symptoms of IH begin in adolescence or young adulthood, although they can begin at a later age. […] After onset, hypersomnia often worsens over several years, but it is often stable by the time of diagnosis and appears to be a lifelong condition. […] Spontaneous remission is only seen in 10-15% of patients. […] According to the limited epidemiological data that exists, IH „has more of a female preponderance (1.8/1).” […] Family cases are frequent, in a range from 25% to 66% without any clear mode of inheritance. […] IH has long been considered a rare disease, believed to be 10 times less frequent than narcolepsy. […] The prevalence of narcolepsy (with cataplexy) is estimated between 1/3,300 and 1/5,000. […] Although the true prevalence of IH is unknown, it is estimated at 1/10,000 to 1/25,000 for the long sleep form and 1/11,000 to 1/100,000 without long sleep.

• #16 Idiopathic hypersomnia – Wikipedia

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

  Typically, the symptoms of IH begin in adolescence or young adulthood, although they can begin at a later age. […] After onset, hypersomnia often worsens over several years, but it is often stable by the time of diagnosis and appears to be a lifelong condition. […] Spontaneous remission is only seen in 10-15% of patients. […] According to the limited epidemiological data that exists, IH „has more of a female preponderance (1.8/1).” […] Family cases are frequent, in a range from 25% to 66% without any clear mode of inheritance. […] IH has long been considered a rare disease, believed to be 10 times less frequent than narcolepsy. […] The prevalence of narcolepsy (with cataplexy) is estimated between 1/3,300 and 1/5,000. […] Although the true prevalence of IH is unknown, it is estimated at 1/10,000 to 1/25,000 for the long sleep form and 1/11,000 to 1/100,000 without long sleep.

• #17 Idiopathic Hypersomnia, Understanding the Often Overlooked Sleep Disorder | Jazz Pharmaceuticals

  https://www.jazzpharma.com/science_stories/idiopathic-hypersomnia-understanding-often-overlooked-sleep-disorder

  Idiopathic hypersomnia (IH) is a debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness. Patients with IH are often unable to stay awake and alert during the day, which results in an irrepressible need to sleep or unplanned lapses into sleep or drowsiness. Its not a problem that can be solved with naps or a good nights sleeppeople with IH may sleep a normal or longer than normal amount of time each night but still experience excessive sleepiness during the day. […] Managing the challenges of IH is further complicated by low levels of awareness which may contribute to patients experiencing long delays in receiving an accurate diagnosisup to 10 to 15 years in some cases. […] According to data from insurance claims, the number of people diagnosed with IH and actively seeking healthcare is approximately 37,000 patients in the U.S.; however, given how often IH is misdiagnosed, many people have not received an official diagnosis, indicating that the unmet need may be significantly greater.

• #18 Prevalence, Comorbidities of Idiopathic Hypersomnia Revealed in New Posters

  https://www.ajmc.com/view/prevalence-comorbidities-of-idiopathic-hypersomnia-revealed-in-new-posters

  Posters presented at SLEEP 2023 estimated the prevalence of idiopathic hypersomnia as well as incidence of comorbidities. […] Idiopathic hypersomnia (IH) has been found to be prevalent in adults, and those with IH experience a significant burden of psychiatric and medical comorbidities, according to findings in posters presented at SLEEP 2023. […] Limited research has looked into the prevalence of IH and its comorbidities, but these newly published posters looked into both areas of interest. […] The study found eligible patients in each year of 2019, 2020, and 2021; 158 million were eligible for 2019, 168 million for 2020, and 187 million for 2021. […] The unweighted diagnosed prevalence of IH was found to be 32.12 per 100,000 persons (95% CI, 31.84-32.40) in 2019, 35.71 per 100,000 persons (95% CI, 35.43-36.00) in 2020, and 37.03 per 100,000 persons (95% CI, 36.75-37.30) in 2021.

• #19 Primary Hypersomnia: Practice Essentials, Background, Etiology

  https://emedicine.medscape.com/article/291699-overview

  While the rates of excessive daytime sleepiness complaints in the general US population are between 0.5% and 5% of adults (in surveys without a specific consideration of causes/diagnoses), idiopathic hypersomnia (IH) is diagnosed in about 5%10% of individuals who are self-referred to a sleep clinic with a chief complaint of daytime sleepiness. A precise estimation of idiopathic hypersomnia prevalence is complicated by a lack of clear biologic markers or unambiguous diagnostic criteria. As a result, the reported prevalence rates of IH vary broadly. […] A 2023 study reported a much lower prevalence rate, estimating the rate of IH in US adults to be 32.12 per 100,000 persons in 2019, 35.71 per 100,000 persons in 2020, and 37.03 per 100,000 persons in 2021. […] IH prevalence varies between males and females. In the Wisconsin Sleep Cohort, the estimate prevalence of IH was 3.8% among both males and females, although female predominance was found in some studies. Approximately 33%66% of idiopathic hypersomnia cases appear to be familial.

• #20 Prevalence, Comorbidities of Idiopathic Hypersomnia Revealed in New Posters

  https://www.ajmc.com/view/prevalence-comorbidities-of-idiopathic-hypersomnia-revealed-in-new-posters

  The standardized number of adults diagnosed with IH in the United States was estimated at 80,603 (95% CI, 80,048-81,161) in 2019; 89,539 (95% CI, 88,954-90,127) in 2020; and 92,139 (95% CI, 91,545-92,736) in 2021. […] The researchers acknowledged that a proportion of IH cases may remain undiagnosed, as the condition is underrecognized, there is a low utilization of sleep testing, and there are concerns with the reliability of latency testing. […] The clinical burden for patients with IH was also examined, as those with this disorder tend to experience comorbidities. […] A higher prevalence of all CCSM categories were found in patients with IH compared with the controls. […] Similar to other sleep disorders like narcolepsy, patients with IH were found to have a significant burden of comorbidities, including chronic cardiovascular diseases. The 2 posters findings indicate that increased awareness of IH is important, not only for more accurate diagnoses but also to help treat those who have IH for potential comorbidities.

• #21 Idiopathic Hypersomnia – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK585065/

  Idiopathic hypersomnia (IH) is a rare chronic sleep disorder introduced by Bedrich Roth in Prague in 1956. […] Idiopathic hypersomnia is considered a disorder of neurological origin, classified as a central disorder of hypersomnolence; others include narcolepsy, type 1 and type 2, and Kleine-Levin syndrome. […] Although central hypersomnia is considered a continuum, the rate of its subtypes differs. IH has the lowest rate compared to narcolepsy type 1 and type 2 (approximately 82%, 13%, and 5%, respectively). […] The prevalence of IH increased in the last decade by 32% (from 7.8 to 10.3 per 100,000 persons) in both men and women equally.

• #22 Idiopathic Hypersomnia | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/145574

  Idiopathic hypersomnia (IH) is a rare chronic sleep disorder introduced by Bedrich Roth in Prague in 1956. […] Idiopathic hypersomnia is considered a disorder of neurological origin, classified as a central disorder of hypersomnolence; others include narcolepsy, type 1 and type 2, and Kleine-Levin syndrome. […] IH has the lowest rate compared to narcolepsy type 1 and type 2 (approximately 82%, 13%, and 5%, respectively). […] Approximately one-third of cases have a positive family history, with family members having IH or other central disorders of hypersomnolence such as narcolepsy. […] The prevalence of IH increased in the last decade by 32% (from 7.8 to 10.3 per 100,000 persons) in both men and women equally.

• #23 Retrospective Study Finds Increase in Narcolepsy and Idiopathic Hypersomnia Prevalence | Sleep Review

  https://sleepreviewmag.com/sleep-disorders/hypersomnias/narcolepsy/narcolepsy-ih-prevalence/

  Over 4 years, narcolepsy prevalence in claims data increased 13.8% and IH prevalence 33.8%. […] The prevalence of both narcolepsy and idiopathic hypersomnia have increased from 2013 to 2016, according to a new study that examined nationwide claims. […] The prevalence of idiopathic hypersomnia increased by 33.8% from 2013 to 2016 with 13%, 2.3%, and 15.7% annual increases, respectively. […] However, what the study does indicate is that there seems to be a rise in narcolepsy and idiopathic hypersomnia cases in the US population over time.

• #24 Rare sleep disorder more prevalent than previously thought | ScienceDaily

  https://www.sciencedaily.com/releases/2023/12/231213212524.htm

  People who are very sleepy during the day, despite a good night’s rest, may have a sleep disorder called idiopathic hypersomnia. […] New research has found this neurologic disorder may not be as rare as once thought. […] „It has been difficult to determine the prevalence of idiopathic hypersomnia because expensive and time-consuming sleep testing is required to make a diagnosis,” said study author David T. Plante, MD, PhD, of the University of Wisconsin-Madison. „We examined data from a large sleep study and found that this condition is much more common than previous estimates, and as prevalent as some other common neurologic and psychiatric conditions such as epilepsy, bipolar disorder and schizophrenia.” […] „Our results demonstrate that idiopathic hypersomnia is relatively common, more prevalent than generally assumed, so there is likely a sizable difference between the number of people with this disorder and those who seek treatment,” said Plante. „Further efforts to identify, diagnose and treat those impaired by idiopathic hypersomnia are needed. Additional research may also clarify the causes of idiopathic hypersomnia and lead to new treatments.” […] A limitation of the study was that study participants were employed, so prevalence could be different in other populations, and may be even higher in the unemployed since people with idiopathic hypersomnia have higher rates of job loss and disability.

• #25 Idiopathic Hypersomnia: Understanding Its Rarity And Prevalence | TheHealthSite.com

  https://www.thehealthsite.com/diseases-conditions/idiopathic-hypersomnia-understanding-its-rarity-and-prevalence-1046681/

  A recent study, published in Neurology, sheds light on the prevalence of idiopathic hypersomnia, challenging previous perceptions of its rarity. […] The disorder emerges as more widespread than anticipated, demonstrating a prevalence comparable to other prevalent neurologic and psychiatric conditions such as epilepsy, bipolar disorder, and schizophrenia. […] From the extensive study group, 1.5% exhibited probable cases of idiopathic hypersomnia. […] The study’s revelation challenges the assumptions surrounding idiopathic hypersomnia’s rarity, emphasizing the gap between those with the disorder and those seeking treatment. […] Acknowledging the study’s limitations, the employed status of participants raises questions about potential variations in prevalence across different populations.

• #26 Azthena logo with the word Azthena

  https://www.news-medical.net/news/20231213/Idiopathic-hypersomnia-may-not-be-as-rare-as-previously-thought.aspx

  People who are very sleepy during the day, despite a good night’s rest, may have a sleep disorder called idiopathic hypersomnia. […] New research has found this neurologic disorder may not be as rare as once thought. […] It has been difficult to determine the prevalence of idiopathic hypersomnia because expensive and time-consuming sleep testing is required to make a diagnosis. […] Researchers determined that 12 people had probable cases of idiopathic hypersomnia, for a prevalence of 1.5%. […] „Our results demonstrate that idiopathic hypersomnia is relatively common, more prevalent than generally assumed, so there is likely a sizable difference between the number of people with this disorder and those who seek treatment,” said Plante. […] A limitation of the study was that study participants were employed, so prevalence could be different in other populations, and may be even higher in the unemployed since people with idiopathic hypersomnia have higher rates of job loss and disability.

• #27 American Academy of Neurology: Neurology Resources | AAN

  https://www.aan.com/PressRoom/Home/PressRelease/5133

  People who are very sleepy during the day, despite a good nights rest, may have a sleep disorder called idiopathic hypersomnia. New research has found this neurologic disorder may not be as rare as once thought. […] We examined data from a large sleep study and found that this condition is much more common than previous estimates, and as prevalent as some other common neurologic and psychiatric conditions such as epilepsy, bipolar disorder and schizophrenia. […] Our results demonstrate that idiopathic hypersomnia is relatively common, more prevalent than generally assumed, so there is likely a sizable difference between the number of people with this disorder and those who seek treatment, said Plante. Further efforts to identify, diagnose and treat those impaired by idiopathic hypersomnia are needed. […] A limitation of the study was that study participants were employed, so prevalence could be different in other populations, and may be even higher in the unemployed since people with idiopathic hypersomnia have higher rates of job loss and disability.

• #28 'Rare’ disorder that causes extreme sleepiness may more common than thought | Live Science

  https://www.livescience.com/health/sleep/rare-disorder-that-causes-extreme-sleepiness-may-more-common-than-thought

  A new study suggests that a sleep disorder called idiopathic hypersomnia may not be as rare as previously thought. […] In a new study, scientists analyzed sleep data from nearly 800 people and found that 1.5% of them likely had idiopathic hypersomnia, a debilitating neurological condition that causes people to feel an excessive need to sleep and leads them to sleep a lot yet still feel sleepy during the day. […] For instance, an estimated 37 people per 100,000 were diagnosed with the condition in the U.S. in 2021 or 0.037% of the population. However, scientists think the condition is likely underrecognized due to a lack of awareness and because „expensive” and „time-consuming” sleep testing is needed to make a diagnosis, Dr. David Plante, co-author of the new study and an associate professor of psychiatry at the University of Wisconsin-Madison, said in a statement.

• #29 'Rare’ disorder that causes extreme sleepiness may more common than thought | Live Science

  https://www.livescience.com/health/sleep/rare-disorder-that-causes-extreme-sleepiness-may-more-common-than-thought

  „Our results demonstrate that idiopathic hypersomnia is relatively common, more prevalent than generally assumed, so there is likely a sizable difference between the number of people with this disorder and those who seek treatment,” Plante said in the statement. […] Larger studies are needed to confirm these initial findings about the potential prevalence of idiopathic hypersomnia, as well as to investigate sleep patterns in a wider range of people. […] It’s therefore possible that the condition is even more common than these new estimates suggest, the authors wrote in the paper.

• #30 Idiopathic Hypersomnia, Understanding the Often Overlooked Sleep Disorder | Jazz Pharmaceuticals

  https://www.jazzpharma.com/science_stories/idiopathic-hypersomnia-understanding-often-overlooked-sleep-disorder

  Idiopathic hypersomnia (IH) is a debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness. Patients with IH are often unable to stay awake and alert during the day, which results in an irrepressible need to sleep or unplanned lapses into sleep or drowsiness. Its not a problem that can be solved with naps or a good nights sleeppeople with IH may sleep a normal or longer than normal amount of time each night but still experience excessive sleepiness during the day. […] Managing the challenges of IH is further complicated by low levels of awareness which may contribute to patients experiencing long delays in receiving an accurate diagnosisup to 10 to 15 years in some cases. […] According to data from insurance claims, the number of people diagnosed with IH and actively seeking healthcare is approximately 37,000 patients in the U.S.; however, given how often IH is misdiagnosed, many people have not received an official diagnosis, indicating that the unmet need may be significantly greater.

• #31 Prevalence, Comorbidities of Idiopathic Hypersomnia Revealed in New Posters

  https://www.ajmc.com/view/prevalence-comorbidities-of-idiopathic-hypersomnia-revealed-in-new-posters

  The standardized number of adults diagnosed with IH in the United States was estimated at 80,603 (95% CI, 80,048-81,161) in 2019; 89,539 (95% CI, 88,954-90,127) in 2020; and 92,139 (95% CI, 91,545-92,736) in 2021. […] The researchers acknowledged that a proportion of IH cases may remain undiagnosed, as the condition is underrecognized, there is a low utilization of sleep testing, and there are concerns with the reliability of latency testing. […] The clinical burden for patients with IH was also examined, as those with this disorder tend to experience comorbidities. […] A higher prevalence of all CCSM categories were found in patients with IH compared with the controls. […] Similar to other sleep disorders like narcolepsy, patients with IH were found to have a significant burden of comorbidities, including chronic cardiovascular diseases. The 2 posters findings indicate that increased awareness of IH is important, not only for more accurate diagnoses but also to help treat those who have IH for potential comorbidities.

• #32 Prevalence, Comorbidities of Idiopathic Hypersomnia Revealed in New Posters

  https://www.ajmc.com/view/prevalence-comorbidities-of-idiopathic-hypersomnia-revealed-in-new-posters

  The standardized number of adults diagnosed with IH in the United States was estimated at 80,603 (95% CI, 80,048-81,161) in 2019; 89,539 (95% CI, 88,954-90,127) in 2020; and 92,139 (95% CI, 91,545-92,736) in 2021. […] The researchers acknowledged that a proportion of IH cases may remain undiagnosed, as the condition is underrecognized, there is a low utilization of sleep testing, and there are concerns with the reliability of latency testing. […] The clinical burden for patients with IH was also examined, as those with this disorder tend to experience comorbidities. […] A higher prevalence of all CCSM categories were found in patients with IH compared with the controls. […] Similar to other sleep disorders like narcolepsy, patients with IH were found to have a significant burden of comorbidities, including chronic cardiovascular diseases. The 2 posters findings indicate that increased awareness of IH is important, not only for more accurate diagnoses but also to help treat those who have IH for potential comorbidities.

• #33 Prevalence, Comorbidities of Idiopathic Hypersomnia Revealed in New Posters

  https://www.ajmc.com/view/prevalence-comorbidities-of-idiopathic-hypersomnia-revealed-in-new-posters

  The standardized number of adults diagnosed with IH in the United States was estimated at 80,603 (95% CI, 80,048-81,161) in 2019; 89,539 (95% CI, 88,954-90,127) in 2020; and 92,139 (95% CI, 91,545-92,736) in 2021. […] The researchers acknowledged that a proportion of IH cases may remain undiagnosed, as the condition is underrecognized, there is a low utilization of sleep testing, and there are concerns with the reliability of latency testing. […] The clinical burden for patients with IH was also examined, as those with this disorder tend to experience comorbidities. […] A higher prevalence of all CCSM categories were found in patients with IH compared with the controls. […] Similar to other sleep disorders like narcolepsy, patients with IH were found to have a significant burden of comorbidities, including chronic cardiovascular diseases. The 2 posters findings indicate that increased awareness of IH is important, not only for more accurate diagnoses but also to help treat those who have IH for potential comorbidities.

• #34 Lack of Knowledge on Idiopathic Hypersomnia Often Leads to Misdiagnosis – Psychiatry Advisor

  https://www.psychiatryadvisor.com/features/idiopathic-hypersomnia-is-often-misdiagnosed/

  A survey of health care providers found a lack of knowledge on idiopathic hypersomnia (IH) among physicians, and that the disorder is often misdiagnosed. […] The Hypersomnia Foundation and Jazz Pharmaceuticals plc have partnered on a disease awareness campaign, I Have IH, to increase awareness and knowledge of IH within the health and larger sleep community. […] This survey was conducted online by Toluna Analytics between February 5 and February 12, 2021 among a nationally representative sample of 305 health care providers. […] One factor in understanding the disorder is that it tends to involve more women and it tends to be more young women when it first starts. […] Many times, they see their family physicians and get worked up for low thyroid or get treated for mood disturbance because they’re considered depressed. […] These oftentimes are blamed on personality characteristics, or being lazy, etc., and then they’re treated for depression and it’s really idiopathic hypersomnia.

• #35 American Academy of Neurology: Neurology Resources | AAN

  https://www.aan.com/PressRoom/Home/PressRelease/5133

  People who are very sleepy during the day, despite a good nights rest, may have a sleep disorder called idiopathic hypersomnia. New research has found this neurologic disorder may not be as rare as once thought. […] We examined data from a large sleep study and found that this condition is much more common than previous estimates, and as prevalent as some other common neurologic and psychiatric conditions such as epilepsy, bipolar disorder and schizophrenia. […] Our results demonstrate that idiopathic hypersomnia is relatively common, more prevalent than generally assumed, so there is likely a sizable difference between the number of people with this disorder and those who seek treatment, said Plante. Further efforts to identify, diagnose and treat those impaired by idiopathic hypersomnia are needed. […] A limitation of the study was that study participants were employed, so prevalence could be different in other populations, and may be even higher in the unemployed since people with idiopathic hypersomnia have higher rates of job loss and disability.

• #36 Azthena logo with the word Azthena

  https://www.news-medical.net/news/20231213/Idiopathic-hypersomnia-may-not-be-as-rare-as-previously-thought.aspx

  People who are very sleepy during the day, despite a good night’s rest, may have a sleep disorder called idiopathic hypersomnia. […] New research has found this neurologic disorder may not be as rare as once thought. […] It has been difficult to determine the prevalence of idiopathic hypersomnia because expensive and time-consuming sleep testing is required to make a diagnosis. […] Researchers determined that 12 people had probable cases of idiopathic hypersomnia, for a prevalence of 1.5%. […] „Our results demonstrate that idiopathic hypersomnia is relatively common, more prevalent than generally assumed, so there is likely a sizable difference between the number of people with this disorder and those who seek treatment,” said Plante. […] A limitation of the study was that study participants were employed, so prevalence could be different in other populations, and may be even higher in the unemployed since people with idiopathic hypersomnia have higher rates of job loss and disability.

• #37 Primary Hypersomnia: Practice Essentials, Background, Etiology

  https://emedicine.medscape.com/article/291699-overview

  While the rates of excessive daytime sleepiness complaints in the general US population are between 0.5% and 5% of adults (in surveys without a specific consideration of causes/diagnoses), idiopathic hypersomnia (IH) is diagnosed in about 5%10% of individuals who are self-referred to a sleep clinic with a chief complaint of daytime sleepiness. A precise estimation of idiopathic hypersomnia prevalence is complicated by a lack of clear biologic markers or unambiguous diagnostic criteria. As a result, the reported prevalence rates of IH vary broadly. […] A 2023 study reported a much lower prevalence rate, estimating the rate of IH in US adults to be 32.12 per 100,000 persons in 2019, 35.71 per 100,000 persons in 2020, and 37.03 per 100,000 persons in 2021. […] IH prevalence varies between males and females. In the Wisconsin Sleep Cohort, the estimate prevalence of IH was 3.8% among both males and females, although female predominance was found in some studies. Approximately 33%66% of idiopathic hypersomnia cases appear to be familial.

• #38 Idiopathic hypersomnia – Wikipedia

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

  Typically, the symptoms of IH begin in adolescence or young adulthood, although they can begin at a later age. […] After onset, hypersomnia often worsens over several years, but it is often stable by the time of diagnosis and appears to be a lifelong condition. […] Spontaneous remission is only seen in 10-15% of patients. […] According to the limited epidemiological data that exists, IH „has more of a female preponderance (1.8/1).” […] Family cases are frequent, in a range from 25% to 66% without any clear mode of inheritance. […] IH has long been considered a rare disease, believed to be 10 times less frequent than narcolepsy. […] The prevalence of narcolepsy (with cataplexy) is estimated between 1/3,300 and 1/5,000. […] Although the true prevalence of IH is unknown, it is estimated at 1/10,000 to 1/25,000 for the long sleep form and 1/11,000 to 1/100,000 without long sleep.

• #39 Primary Hypersomnia: Practice Essentials, Background, Etiology

  https://emedicine.medscape.com/article/291699-overview

  As with narcolepsy and Kleine-Levin syndrome (KLS), onset of hypersomnolence is most common during adolescence and rare in people older than 30 years. The diagnosis of IH is complicated by the fact that differentiating between excessive versus long sleep or normal versus abnormal wakefulness is often difficult, especially during adolescence.

• #40 Idiopathic hypersomnia – Wikipedia

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

  Typically, the symptoms of IH begin in adolescence or young adulthood, although they can begin at a later age. […] After onset, hypersomnia often worsens over several years, but it is often stable by the time of diagnosis and appears to be a lifelong condition. […] Spontaneous remission is only seen in 10-15% of patients. […] According to the limited epidemiological data that exists, IH „has more of a female preponderance (1.8/1).” […] Family cases are frequent, in a range from 25% to 66% without any clear mode of inheritance. […] IH has long been considered a rare disease, believed to be 10 times less frequent than narcolepsy. […] The prevalence of narcolepsy (with cataplexy) is estimated between 1/3,300 and 1/5,000. […] Although the true prevalence of IH is unknown, it is estimated at 1/10,000 to 1/25,000 for the long sleep form and 1/11,000 to 1/100,000 without long sleep.

• #41 Primary Hypersomnia: Practice Essentials, Background, Etiology

  https://emedicine.medscape.com/article/291699-overview

  As with narcolepsy and Kleine-Levin syndrome (KLS), onset of hypersomnolence is most common during adolescence and rare in people older than 30 years. The diagnosis of IH is complicated by the fact that differentiating between excessive versus long sleep or normal versus abnormal wakefulness is often difficult, especially during adolescence.

• #42 Idiopathic hypersomnia – UpToDate

  https://www.uptodate.com/contents/idiopathic-hypersomnia/print

  Idiopathic hypersomnia is a central disorder of hypersomnolence, characterized by at least three months of daily periods of irrepressible need to sleep, or daytime lapses into sleep or drowsiness. […] The prevalence of idiopathic hypersomnia in the general population is unknown, in part because laboratory-based polysomnography and other assessments that would be necessary to rule out other causes of excessive daytime sleepiness have not been feasible in large numbers of unselected, representative subjects from the community. […] Based largely on sleep center referrals or large insurance claims databases, idiopathic hypersomnia appears to be significantly less common than narcolepsy, with a prevalence of approximately 20 to 100 cases per million people. […] One study estimated a much higher prevalence of probable idiopathic hypersomnia (1.5 percent) based on nocturnal polysomnograms and multiple sleep latency tests in a population-based sample of working adults in the Wisconsin Sleep Study. […] Some but not all reports have suggested females are affected more commonly than males.

• #43 Idiopathic hypersomnia – Wikipedia

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

  Typically, the symptoms of IH begin in adolescence or young adulthood, although they can begin at a later age. […] After onset, hypersomnia often worsens over several years, but it is often stable by the time of diagnosis and appears to be a lifelong condition. […] Spontaneous remission is only seen in 10-15% of patients. […] According to the limited epidemiological data that exists, IH „has more of a female preponderance (1.8/1).” […] Family cases are frequent, in a range from 25% to 66% without any clear mode of inheritance. […] IH has long been considered a rare disease, believed to be 10 times less frequent than narcolepsy. […] The prevalence of narcolepsy (with cataplexy) is estimated between 1/3,300 and 1/5,000. […] Although the true prevalence of IH is unknown, it is estimated at 1/10,000 to 1/25,000 for the long sleep form and 1/11,000 to 1/100,000 without long sleep.

• #44 Primary Hypersomnia: Practice Essentials, Background, Etiology

  https://emedicine.medscape.com/article/291699-overview

  While the rates of excessive daytime sleepiness complaints in the general US population are between 0.5% and 5% of adults (in surveys without a specific consideration of causes/diagnoses), idiopathic hypersomnia (IH) is diagnosed in about 5%10% of individuals who are self-referred to a sleep clinic with a chief complaint of daytime sleepiness. A precise estimation of idiopathic hypersomnia prevalence is complicated by a lack of clear biologic markers or unambiguous diagnostic criteria. As a result, the reported prevalence rates of IH vary broadly. […] A 2023 study reported a much lower prevalence rate, estimating the rate of IH in US adults to be 32.12 per 100,000 persons in 2019, 35.71 per 100,000 persons in 2020, and 37.03 per 100,000 persons in 2021. […] IH prevalence varies between males and females. In the Wisconsin Sleep Cohort, the estimate prevalence of IH was 3.8% among both males and females, although female predominance was found in some studies. Approximately 33%66% of idiopathic hypersomnia cases appear to be familial.

• #45 Idiopathic hypersomnia – Wikipedia

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

  Typically, the symptoms of IH begin in adolescence or young adulthood, although they can begin at a later age. […] After onset, hypersomnia often worsens over several years, but it is often stable by the time of diagnosis and appears to be a lifelong condition. […] Spontaneous remission is only seen in 10-15% of patients. […] According to the limited epidemiological data that exists, IH „has more of a female preponderance (1.8/1).” […] Family cases are frequent, in a range from 25% to 66% without any clear mode of inheritance. […] IH has long been considered a rare disease, believed to be 10 times less frequent than narcolepsy. […] The prevalence of narcolepsy (with cataplexy) is estimated between 1/3,300 and 1/5,000. […] Although the true prevalence of IH is unknown, it is estimated at 1/10,000 to 1/25,000 for the long sleep form and 1/11,000 to 1/100,000 without long sleep.

• #46 Orphanet: Idiopathic hypersomnia

  https://www.orpha.net/en/disease/detail/33208

  A rare neurologic disease characterized by an excessive daytime sleepiness with long and unrefreshing naps, and/or prolonged and undisturbed nocturnal sleep, impaired daytime alertness, and/or sleep inertia (ie, great difficulty in waking up after sleep) and where other causes have been excluded. […] The prevalence estimates were initially based on the proportion of patients with idiopathic hypersomnia (IH) over those with narcolepsy in the sleep medicine population. The consensus currently estimates prevalence of IH in the range of 0.002%-0.010% in the general population. A higher frequency in women is reported. […] IH appears to be familial; however, there is no information on inheritance or penetrance.

• #47 Primary Hypersomnia: Practice Essentials, Background, Etiology

  https://emedicine.medscape.com/article/291699-overview

  While the rates of excessive daytime sleepiness complaints in the general US population are between 0.5% and 5% of adults (in surveys without a specific consideration of causes/diagnoses), idiopathic hypersomnia (IH) is diagnosed in about 5%10% of individuals who are self-referred to a sleep clinic with a chief complaint of daytime sleepiness. A precise estimation of idiopathic hypersomnia prevalence is complicated by a lack of clear biologic markers or unambiguous diagnostic criteria. As a result, the reported prevalence rates of IH vary broadly. […] A 2023 study reported a much lower prevalence rate, estimating the rate of IH in US adults to be 32.12 per 100,000 persons in 2019, 35.71 per 100,000 persons in 2020, and 37.03 per 100,000 persons in 2021. […] IH prevalence varies between males and females. In the Wisconsin Sleep Cohort, the estimate prevalence of IH was 3.8% among both males and females, although female predominance was found in some studies. Approximately 33%66% of idiopathic hypersomnia cases appear to be familial.

• #48 Idiopathic Hypersomnia Demonstrates Moderate to Severe Impact on Quality of Life, Patient-Reported Outcomes

  https://www.neurologylive.com/view/idiopathic-hypersomnia-demonstrates-moderate-severe-impact-qol-patient-reported-outcomes

  Real-world results from the ARISE study showed that idiopathic hypersomnia (IH), an uncommon sleep disorder that causes excessive daytime sleepiness, is associated with a moderate to severe effect on quality of life (QoL), as demonstrated by responses on patient-reported outcomes. […] A chronic neurologic disorder, the cause of IH is presently unknown, although a genetic predisposition is suggested by the strong family history of similar symptoms.

• #49 Idiopathic Hypersomnia (IH) Market Outlook and Forecast – Thelansis

  https://thelansis.com/reports/idiopathic-hypersomnia-ih-market-outlook-forecast/

  Idiopathic hypersomnia (IH) is a chronic neurological condition characterized by excessive daytime sleepiness, sometimes accompanied by extended sleep periods. Accurate estimates of IH prevalence are challenging due to the need for specialized testing and the need to rule out other disorders with similar symptoms. Clinical figures regarding IH’s occurrence can vary significantly, with some studies indicating a 1:10 ratio compared to narcolepsy with cataplexy. It’s noteworthy that a family history of excessive sleepiness or other hypersomnolence-related central disorders is evident in about 34-38% of IH patients, and 12.5% have at least one parent who consistently sleeps more than 9.5 hours per night. […] The diagnosis of IH is intricate, starting with the observation of excessive daytime sleep. A definitive diagnosis typically requires polysomnography and multiple sleep latency tests (MSLT), which should be conducted without sleep-affecting medication.

• #50 Idiopathic hypersomnia – Wikipedia

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

  Typically, the symptoms of IH begin in adolescence or young adulthood, although they can begin at a later age. […] After onset, hypersomnia often worsens over several years, but it is often stable by the time of diagnosis and appears to be a lifelong condition. […] Spontaneous remission is only seen in 10-15% of patients. […] According to the limited epidemiological data that exists, IH „has more of a female preponderance (1.8/1).” […] Family cases are frequent, in a range from 25% to 66% without any clear mode of inheritance. […] IH has long been considered a rare disease, believed to be 10 times less frequent than narcolepsy. […] The prevalence of narcolepsy (with cataplexy) is estimated between 1/3,300 and 1/5,000. […] Although the true prevalence of IH is unknown, it is estimated at 1/10,000 to 1/25,000 for the long sleep form and 1/11,000 to 1/100,000 without long sleep.

• #51 Idiopathic hypersomnia – Hypersomnia Foundation

  https://www.hypersomniafoundation.org/ih/

  Idiopathic hypersomnia (IH) is a long-lasting (chronic) sleep disorder of the brain (neurologic disorder). Idiopathic means doctors don’t know what causes it. […] It’s hard to know how many people have IH. Some researchers have estimated 1 in every 50,000 people have IH. Other researchers have estimated 1 in every 3,000 people have IH. […] A few studies of people with IH have reported that the likelihood of IH going away on its own (the remission rate) is 10% to 33% (1 to 3 in every 10 people). However, because the cause of IH isn’t known and diagnosis can be unclear, some or all people whose IH went away might just have been initially misdiagnosed with IH. They may have actually had other conditions that were causing their excessive daytime sleepiness. […] Having IH can greatly affect daily life: Waking up is usually very hard, especially for people who have IH with long sleep. They often need multiple alarms and morning rituals to wake up for school or work. The amount and timing of needed sleep can limit daily activities. IH can cause problems with thinking, working, and socializing. People with IH may have trouble doing their jobs, staying in school, having romantic relationships, and fully engaging with their friends and loved ones.

• #52 0838 Diagnosed Prevalence of Idiopathic Hypersomnia Among Adults in the United States

  https://ouci.dntb.gov.ua/en/works/4vrkAeM4/

  Idiopathic hypersomnia (IH) is a rare neurologic disorder that can cause debilitating symptoms, including excessive daytime sleepiness, severe sleep inertia, prolonged nighttime sleep, long and unrefreshing naps, and cognitive dysfunction. […] The objective of this study was to estimate the diagnosed prevalence of IH among US adults between 2019 and 2021. […] The unweighted diagnosed prevalence of IH was 32.12 per 100,000 persons (CI: 31.84, 32.40), 35.71 per 100,000 persons (CI: 35.43, 36.00), and 37.03 per 100,000 persons (CI: 36.75, 37.30) in 2019, 2020, and 2021, respectively. […] To our knowledge, this is the most recent study to estimate diagnosed prevalence of IH in US adults. […] Given its impact on patients’ lives, further research to improve surveillance of IH symptoms is needed.

• #53 Idiopathic hypersomnia – Wikipedia

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

  A more precise estimate „is complicated by a lack of clear biologic markers” and a lack of „unambiguous diagnostic criteria.” […] Because of the rarity of IH, research into the condition is limited „Patients are rare, researchers and scientists involved in the field are few and research findings are therefore scarce.” […] „In Europe and in North America there is now a public health concern about helping patients and families affected by these rare diseases. Due to the complexity of the disease, they often experience difficulties to be diagnosed and often face social and professional consequences.”

• #54 Idiopathic hypersomnia – Wikipedia

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

  A more precise estimate „is complicated by a lack of clear biologic markers” and a lack of „unambiguous diagnostic criteria.” […] Because of the rarity of IH, research into the condition is limited „Patients are rare, researchers and scientists involved in the field are few and research findings are therefore scarce.” […] „In Europe and in North America there is now a public health concern about helping patients and families affected by these rare diseases. Due to the complexity of the disease, they often experience difficulties to be diagnosed and often face social and professional consequences.”

• #55 Idiopathic Hypersomnia (IH) — Rare Genomics Institute

  https://www.raregenomics.org/idiopathic-hypersomnia

  Idiopathic hypersomnia (IH) is not common in the general population with a prevalence rate around 0.3%. […] The National Institutes of Health (NIH) has completed 10 clinical trials for IH. Currently, there are 7 clinical trials underway for the condition.

• #56 Top Published Expert Doctors for Idiopathic Hypersomnia

  https://www.findexpertmd.com/d/Idiopathic_Hypersomnia

  202 top medical experts on Idiopathic Hypersomnia across 18 countries and 12 U.S. states, including 27 MDs (Physicians). This is based on an objective analysis of their Scientific Publications, Clinical Trials, Medicare, and NIH Grants. […] Clinical Trials ClinicalTrials.gov : at least 21 including 10 Completed, 7 Recruiting.

• #57 Top Published Expert Doctors for Idiopathic Hypersomnia

  https://www.findexpertmd.com/d/Idiopathic_Hypersomnia

  202 top medical experts on Idiopathic Hypersomnia across 18 countries and 12 U.S. states, including 27 MDs (Physicians). This is based on an objective analysis of their Scientific Publications, Clinical Trials, Medicare, and NIH Grants. […] Clinical Trials ClinicalTrials.gov : at least 21 including 10 Completed, 7 Recruiting.

• #58 Idiopathic Hypersomnia (IH) Market Outlook and Forecast – Thelansis

  https://thelansis.com/reports/idiopathic-hypersomnia-ih-market-outlook-forecast/

  The competitive landscape includes country-specific approved as well as pipeline therapies. Any asset/product-specific designation or review such as Orphan drug designation, Fast track, Priority Review, Breakthrough Therapy Designation, Rare Pediatric Disease Designation, and Accelerated Approval are tracked and supplemented with analyst commentary. […] The epidemiology trends for Idiopathic Hypersomnia (IH) are analyzed across various regions, including the US, EU-5, Japan, and China, covering incidence, diagnosed cases, and treatable patient pools.

• #59 Central Disorders of Hypersomnolence (Narcolepsy and Idiopathic Hypersomnia) | BIDMC of Boston

  https://www.bidmc.org/conditions-and-treatments/brain-spine-and-nervous-system/central-disorders-of-hypersomnolence

  Patients with idiopathic hypersomnia (IH) often describe excessive daytime sleepiness, prolonged sleep duration (more than 10-11 hours of sleep nightly), and severe difficulty waking up in the morning (sleep inertia). […] The MSLT is a very good test for narcolepsy, but it is less sensitive for idiopathic hypersomnia. As a result, patients with clinical symptoms of idiopathic hypersomnia who report regularly prolonged sleep duration (average sleep duration more than 11 hours/night) may instead be referred for an extended or unrestricted sleep study. […] There is currently no cure for narcolepsy or idiopathic hypersomnia. Treatments are directed at alleviating symptoms of excessive daytime sleepiness and cataplexy.

• #60 Case Study: Extended Polysomnography Confirms an Idiopathic Hypersomnia Diagnosis

  https://consultqd.clevelandclinic.org/case-study-extended-polysomnography-confirms-an-idiopathic-hypersomnia-diagnosis

  Normal or inconsistent MSLT results should not rule out this debilitating disorder. […] Some 30% to 40% of idiopathic hypersomnia sufferers have normal MSLT results, which often leads to them being told their sleepiness is not due to a sleep disorder. […] The central role of the MSLT in diagnosis has led to inadequate patient care and stifled the search for more accurate diagnostic strategies. […] The extended PSG protocol was developed by sleep disorder researchers in France to identify hypersomnia. […] Although the test is routinely performed in France and other European countries, adoption has not occurred in the U.S. and reimbursement for tests other than the MSLT has not been established. […] Extended PSG, a validated test for idiopathic hypersomnia, should be considered for select patients. […] She anticipates that acceptance of this test will be a long process, requiring generation of more data in the U.S. and negotiation with payers.

• #61 Case Study: Extended Polysomnography Confirms an Idiopathic Hypersomnia Diagnosis

  https://consultqd.clevelandclinic.org/case-study-extended-polysomnography-confirms-an-idiopathic-hypersomnia-diagnosis

  Normal or inconsistent MSLT results should not rule out this debilitating disorder. […] Some 30% to 40% of idiopathic hypersomnia sufferers have normal MSLT results, which often leads to them being told their sleepiness is not due to a sleep disorder. […] The central role of the MSLT in diagnosis has led to inadequate patient care and stifled the search for more accurate diagnostic strategies. […] The extended PSG protocol was developed by sleep disorder researchers in France to identify hypersomnia. […] Although the test is routinely performed in France and other European countries, adoption has not occurred in the U.S. and reimbursement for tests other than the MSLT has not been established. […] Extended PSG, a validated test for idiopathic hypersomnia, should be considered for select patients. […] She anticipates that acceptance of this test will be a long process, requiring generation of more data in the U.S. and negotiation with payers.

• #62 Sleep architecture in idiopathic hypersomnia: the influence of age, sex, and body mass index | Scientific Reports

  https://www.nature.com/articles/s41598-024-67203-6

  Idiopathic hypersomnia (IH) is characterized by excessive daytime sleepiness (EDS), irrepressible need to sleep during the daytime and/or prolonged nocturnal sleep duration. […] Generally, IH is considered a rare condition, leading to the majority of studies focusing on relatively small patient cohorts, typically comprising fewer than 20 individuals. The estimated prevalence of IH ranged from 0.002% to 0.01% based on studies conducted between 1997 and 2012. However, in a study conducted in 2024, the potential public health implications of this sleep disorder were highlighted. The findings revealed that IH symptoms were present in up to 1.5% of the Wisconsin Sleep cohort, suggesting a higher prevalence in the general population than previously estimated. […] The present study aimed at characterizing the sleep architecture of IH patients in comparison to healthy controls using a large sample, and to evaluate the moderating influence of age, sex, and BMI on group differences.

• #63 Quality of Life in Patients With Idiopathic Hypersomnia | NSS

  https://www.dovepress.com/impairment-in-functioning-and-quality-of-life-in-patients-with-idiopat-peer-reviewed-fulltext-article-NSS

  Idiopathic hypersomnia is a debilitating neurologic sleep disorder characterized by excessive daytime sleepiness, sleep inertia, and prolonged sleep. Its impact on patients quality of life and daily functioning has not been fully elucidated. The Real World Idiopathic Hypersomnia Outcomes Study (ARISE) evaluated the daily functioning, relationships, cognition, emotional well-being, and productivity/employment of participants with idiopathic hypersomnia. […] The impact of idiopathic hypersomnia on patients quality of life (QoL) and daily functioning has not been well studied. The few available studies indicate that people with idiopathic hypersomnia have greater anxiety, depressive symptoms, cognitive difficulties, and functional impairments compared with people without idiopathic hypersomnia.

• #64 Quality of Life in Patients With Idiopathic Hypersomnia | NSS

  https://www.dovepress.com/impairment-in-functioning-and-quality-of-life-in-patients-with-idiopat-peer-reviewed-fulltext-article-NSS

  Idiopathic hypersomnia is a debilitating neurologic sleep disorder characterized by excessive daytime sleepiness, sleep inertia, and prolonged sleep. Its impact on patients quality of life and daily functioning has not been fully elucidated. The Real World Idiopathic Hypersomnia Outcomes Study (ARISE) evaluated the daily functioning, relationships, cognition, emotional well-being, and productivity/employment of participants with idiopathic hypersomnia. […] The impact of idiopathic hypersomnia on patients quality of life (QoL) and daily functioning has not been well studied. The few available studies indicate that people with idiopathic hypersomnia have greater anxiety, depressive symptoms, cognitive difficulties, and functional impairments compared with people without idiopathic hypersomnia.

• #65 Quality of Life in Patients With Idiopathic Hypersomnia | NSS

  https://www.dovepress.com/impairment-in-functioning-and-quality-of-life-in-patients-with-idiopat-peer-reviewed-fulltext-article-NSS

  The ARISE study was conducted to assess daily functioning and QoL in patients with idiopathic hypersomnia, an area that has not been well studied. The characteristics of this study population were broadly consistent with other larger studies of people with idiopathic hypersomnia (eg, over half were female, and typically 30-40 years of age). Overall, ARISE participants showed impairment in daily functioning and social aspects compared with means from normative populations (ie, individuals who do not experience sleepiness-related impairment, or a general or clinical reference population) using the same scales, as well as substantial impairment in work productivity and general activity. A large proportion of participants reported moderate to severe cognitive complaints and depressive symptoms.

• #66 Quality of Life in Patients With Idiopathic Hypersomnia | NSS

  https://www.dovepress.com/impairment-in-functioning-and-quality-of-life-in-patients-with-idiopat-peer-reviewed-fulltext-article-NSS

  Findings from this real-world study demonstrate the associations of idiopathic hypersomnia with substantial impairments in quality of life, daily functioning, cognition, mood, relationships, and work productivity. These results indicate that measures of functional impairments are important to include in effectiveness trials for idiopathic hypersomnia treatments, and provide a baseline against which treatment effectiveness may be evaluated.

• #67 Idiopathic hypersomnia – Hypersomnia Foundation

  https://www.hypersomniafoundation.org/ih/

  Idiopathic hypersomnia (IH) is a long-lasting (chronic) sleep disorder of the brain (neurologic disorder). Idiopathic means doctors don’t know what causes it. […] It’s hard to know how many people have IH. Some researchers have estimated 1 in every 50,000 people have IH. Other researchers have estimated 1 in every 3,000 people have IH. […] A few studies of people with IH have reported that the likelihood of IH going away on its own (the remission rate) is 10% to 33% (1 to 3 in every 10 people). However, because the cause of IH isn’t known and diagnosis can be unclear, some or all people whose IH went away might just have been initially misdiagnosed with IH. They may have actually had other conditions that were causing their excessive daytime sleepiness. […] Having IH can greatly affect daily life: Waking up is usually very hard, especially for people who have IH with long sleep. They often need multiple alarms and morning rituals to wake up for school or work. The amount and timing of needed sleep can limit daily activities. IH can cause problems with thinking, working, and socializing. People with IH may have trouble doing their jobs, staying in school, having romantic relationships, and fully engaging with their friends and loved ones.

• #68 Is Idiopathic Hypersomnia a Disability? Know Your Legal Rights

  https://www.debofsky.com/articles/idiopathic-hypersomnia-disability/

  Idiopathic hypersomnia (IH) is a chronic neurological sleep disorders characterized by excessive daytime sleepiness, unrefreshing sleep, and cognitive difficulties. While it is often misunderstood and not always recognized as a disabling condition, its severe symptoms can significantly impair a persons ability to work and perform daily activities. Under certain conditions, individuals with idiopathic hypersomnia may qualify for disability insurance benefits. […] The symptoms of idiopathic hypersomnia can profoundly affect a persons ability to work. Excessive daytime sleepiness and unrefreshing sleep make it hard to focus, meet deadlines, or sustain productivity throughout the day. As a result, idiopathic hypersomnia is often the basis for both short-term and long-term disability claims. […] Not only is IH capable of rendering someone unable to work it can also prevent the performance of even the most basic daily tasks. It can be next to impossible for someone with IH to sustain a routine of waking in the morning before work hours and carrying on throughout the day without requiring a nap.

• #69 Is Idiopathic Hypersomnia a Disability? Know Your Legal Rights

  https://www.debofsky.com/articles/idiopathic-hypersomnia-disability/

  Idiopathic hypersomnia (IH) is a chronic neurological sleep disorders characterized by excessive daytime sleepiness, unrefreshing sleep, and cognitive difficulties. While it is often misunderstood and not always recognized as a disabling condition, its severe symptoms can significantly impair a persons ability to work and perform daily activities. Under certain conditions, individuals with idiopathic hypersomnia may qualify for disability insurance benefits. […] The symptoms of idiopathic hypersomnia can profoundly affect a persons ability to work. Excessive daytime sleepiness and unrefreshing sleep make it hard to focus, meet deadlines, or sustain productivity throughout the day. As a result, idiopathic hypersomnia is often the basis for both short-term and long-term disability claims. […] Not only is IH capable of rendering someone unable to work it can also prevent the performance of even the most basic daily tasks. It can be next to impossible for someone with IH to sustain a routine of waking in the morning before work hours and carrying on throughout the day without requiring a nap.

• #70 Prevalence, Comorbidities of Idiopathic Hypersomnia Revealed in New Posters

  https://www.ajmc.com/view/prevalence-comorbidities-of-idiopathic-hypersomnia-revealed-in-new-posters

  The standardized number of adults diagnosed with IH in the United States was estimated at 80,603 (95% CI, 80,048-81,161) in 2019; 89,539 (95% CI, 88,954-90,127) in 2020; and 92,139 (95% CI, 91,545-92,736) in 2021. […] The researchers acknowledged that a proportion of IH cases may remain undiagnosed, as the condition is underrecognized, there is a low utilization of sleep testing, and there are concerns with the reliability of latency testing. […] The clinical burden for patients with IH was also examined, as those with this disorder tend to experience comorbidities. […] A higher prevalence of all CCSM categories were found in patients with IH compared with the controls. […] Similar to other sleep disorders like narcolepsy, patients with IH were found to have a significant burden of comorbidities, including chronic cardiovascular diseases. The 2 posters findings indicate that increased awareness of IH is important, not only for more accurate diagnoses but also to help treat those who have IH for potential comorbidities.

• #71 Prevalence, Comorbidities of Idiopathic Hypersomnia Revealed in New Posters

  https://www.ajmc.com/view/prevalence-comorbidities-of-idiopathic-hypersomnia-revealed-in-new-posters

  The standardized number of adults diagnosed with IH in the United States was estimated at 80,603 (95% CI, 80,048-81,161) in 2019; 89,539 (95% CI, 88,954-90,127) in 2020; and 92,139 (95% CI, 91,545-92,736) in 2021. […] The researchers acknowledged that a proportion of IH cases may remain undiagnosed, as the condition is underrecognized, there is a low utilization of sleep testing, and there are concerns with the reliability of latency testing. […] The clinical burden for patients with IH was also examined, as those with this disorder tend to experience comorbidities. […] A higher prevalence of all CCSM categories were found in patients with IH compared with the controls. […] Similar to other sleep disorders like narcolepsy, patients with IH were found to have a significant burden of comorbidities, including chronic cardiovascular diseases. The 2 posters findings indicate that increased awareness of IH is important, not only for more accurate diagnoses but also to help treat those who have IH for potential comorbidities.

• #72 Review: Idiopathic Hypersomnia Carries Considerable Burden and Remains Poorly Defined

  https://www.ajmc.com/view/review-idiopathic-hypersomnia-carries-considerable-burden-and-remains-poorly-defined

  Furthermore, a plethora of comorbidities are disproportionately linked to IH, including allergies, autoimmunity, inflammation, mental health and attention deficit complications, weight management issues, and more. […] The culmination of this review provides strong evidence that IH is a poorly defined diagnosis of exclusion and its burden extends beyond excessive sleepiness, the authors concluded.

• #73 Rare sleep disorder more prevalent than previously thought | ScienceDaily

  https://www.sciencedaily.com/releases/2023/12/231213212524.htm

  People who are very sleepy during the day, despite a good night’s rest, may have a sleep disorder called idiopathic hypersomnia. […] New research has found this neurologic disorder may not be as rare as once thought. […] „It has been difficult to determine the prevalence of idiopathic hypersomnia because expensive and time-consuming sleep testing is required to make a diagnosis,” said study author David T. Plante, MD, PhD, of the University of Wisconsin-Madison. „We examined data from a large sleep study and found that this condition is much more common than previous estimates, and as prevalent as some other common neurologic and psychiatric conditions such as epilepsy, bipolar disorder and schizophrenia.” […] „Our results demonstrate that idiopathic hypersomnia is relatively common, more prevalent than generally assumed, so there is likely a sizable difference between the number of people with this disorder and those who seek treatment,” said Plante. „Further efforts to identify, diagnose and treat those impaired by idiopathic hypersomnia are needed. Additional research may also clarify the causes of idiopathic hypersomnia and lead to new treatments.” […] A limitation of the study was that study participants were employed, so prevalence could be different in other populations, and may be even higher in the unemployed since people with idiopathic hypersomnia have higher rates of job loss and disability.

• #74 Prevalence and Course of Idiopathic Hypersomnia in the Wisconsin Sleep Cohort Study – PubMed

  https://pubmed.ncbi.nlm.nih.gov/38165322/

  Idiopathic hypersomnia (IH) is a CNS disorder of hypersomnolence of unknown etiology. Due to the requirement for objective sleep testing to diagnose the disorder, there are currently no population-based estimates of the prevalence of IH nor data regarding the longitudinal course of IH in naturalistic settings. […] From 792 cohort study participants with available polysomnography and multiple sleep latency test data, 12 cases with probable IH were identified resulting in an estimated prevalence of IH of 1.5% (95% CI 0.7-2.5,p0.0001). […] These results demonstrate IH is more common in the working population than generally assumed with a prevalence on par with other common neurologic and psychiatric conditions. Further efforts to identify and diagnose those impaired by unexplained daytime somnolence may help clarify the causes of IH and the mechanisms underlying symptomatic remission.

• #75 Rare sleep disorder more prevalent than previously thought | ScienceDaily

  https://www.sciencedaily.com/releases/2023/12/231213212524.htm

  People who are very sleepy during the day, despite a good night’s rest, may have a sleep disorder called idiopathic hypersomnia. […] New research has found this neurologic disorder may not be as rare as once thought. […] „It has been difficult to determine the prevalence of idiopathic hypersomnia because expensive and time-consuming sleep testing is required to make a diagnosis,” said study author David T. Plante, MD, PhD, of the University of Wisconsin-Madison. „We examined data from a large sleep study and found that this condition is much more common than previous estimates, and as prevalent as some other common neurologic and psychiatric conditions such as epilepsy, bipolar disorder and schizophrenia.” […] „Our results demonstrate that idiopathic hypersomnia is relatively common, more prevalent than generally assumed, so there is likely a sizable difference between the number of people with this disorder and those who seek treatment,” said Plante. „Further efforts to identify, diagnose and treat those impaired by idiopathic hypersomnia are needed. Additional research may also clarify the causes of idiopathic hypersomnia and lead to new treatments.” […] A limitation of the study was that study participants were employed, so prevalence could be different in other populations, and may be even higher in the unemployed since people with idiopathic hypersomnia have higher rates of job loss and disability.

• #76 Prevalence, Comorbidities of Idiopathic Hypersomnia Revealed in New Posters

  https://www.ajmc.com/view/prevalence-comorbidities-of-idiopathic-hypersomnia-revealed-in-new-posters

  The standardized number of adults diagnosed with IH in the United States was estimated at 80,603 (95% CI, 80,048-81,161) in 2019; 89,539 (95% CI, 88,954-90,127) in 2020; and 92,139 (95% CI, 91,545-92,736) in 2021. […] The researchers acknowledged that a proportion of IH cases may remain undiagnosed, as the condition is underrecognized, there is a low utilization of sleep testing, and there are concerns with the reliability of latency testing. […] The clinical burden for patients with IH was also examined, as those with this disorder tend to experience comorbidities. […] A higher prevalence of all CCSM categories were found in patients with IH compared with the controls. […] Similar to other sleep disorders like narcolepsy, patients with IH were found to have a significant burden of comorbidities, including chronic cardiovascular diseases. The 2 posters findings indicate that increased awareness of IH is important, not only for more accurate diagnoses but also to help treat those who have IH for potential comorbidities.

• #77 Lack of Knowledge on Idiopathic Hypersomnia Often Leads to Misdiagnosis – Psychiatry Advisor

  https://www.psychiatryadvisor.com/features/idiopathic-hypersomnia-is-often-misdiagnosed/

  A survey of health care providers found a lack of knowledge on idiopathic hypersomnia (IH) among physicians, and that the disorder is often misdiagnosed. […] The Hypersomnia Foundation and Jazz Pharmaceuticals plc have partnered on a disease awareness campaign, I Have IH, to increase awareness and knowledge of IH within the health and larger sleep community. […] This survey was conducted online by Toluna Analytics between February 5 and February 12, 2021 among a nationally representative sample of 305 health care providers. […] One factor in understanding the disorder is that it tends to involve more women and it tends to be more young women when it first starts. […] Many times, they see their family physicians and get worked up for low thyroid or get treated for mood disturbance because they’re considered depressed. […] These oftentimes are blamed on personality characteristics, or being lazy, etc., and then they’re treated for depression and it’s really idiopathic hypersomnia.

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