Materiały źródłowe

• #1 Data and Statistics | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/data/index.html

  Heart defects are common. Every 15 minutes a baby is born with a heart defect in the U.S. Heart defects are common. Heart defects affect nearly 1% of about 40,000 births per year in the United States. The prevalence of some heart defects, especially mild types, is increasing. The prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect. About 1 in 4 babies with a heart defect have a critical heart defect. Infants with critical heart defects generally need surgery or other procedures in their first year of life. The prevalence of all types of heart defects, including critical heart defects, varies by state and by type of defect. Heart defects are a leading cause of birth defect-associated infant illness and death. During 1999-2017, about 1 in every 814 deaths were attributable to heart defects in the United States. Nearly half (48%) of the deaths due to heart defects occurred during infancy (younger than 1 year of age). The complexity of their defect, presence of other birth defects and birthweight might impact their survival to young adulthood. In addition, CDC researchers found that a mother’s race and ethnicity might have contributed to survival. Therefore, factors such as access to care, systemic racism, and implicit bias may contribute to survival to young adulthood.

• #2 Congenital Heart Disease in Children | Doctor

  https://patient.info/doctor/congenital-heart-disease-in-children

  The reported total birth prevalence of congenital heart disease in Europe is 8.2 per thousand live births which is higher than reported birth prevalence in the USA (6.9 per thousand live births). The highest birth prevalence of congenital heart disease (9.3 per thousand) is reported from Asia. […] Congenital heart disease accounts for nearly one third of all major congenital anomalies and is the most common congenital condition diagnosed in newborns. […] The prevalence of adult congenital heart disease is increasing at a rapid pace and currently there are twice as many adults with congenital heart disease as compared with children.

• #3

  https://www.indianpediatrics.net/dec2018/dec-1075-1082.htm

  Considering a birth prevalence of congenital heart disease as 9/1000, the estimated number of children born with congenital heart disease in India is more than 200,000 per year. Of these, about one-fifth are likely to have serious defect, requiring an intervention in the first year of life. Currently advanced cardiac care is available to only a minority of such children. […] The birth prevalence of severe CHD has been consistently reported as 1.5 – 1.7/1000 live births. […] The true incidence or birth prevalence has been reported only in few studies from India, which also include only babies born in the hospital. […] The birth prevalence of CHD in these studies was higher in comparison to data available from other countries. […] The currently available care for these children is grossly inadequate. […] There are over 60 centers that cater to children with congenital heart disease; majority are in southern states of India. […] Improving care of children with congenital heart disease is an uphill task, but needs to be addressed.

• #4 Data and Statistics | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/data/index.html

  Heart defects are common. Every 15 minutes a baby is born with a heart defect in the U.S. Heart defects are common. Heart defects affect nearly 1% of about 40,000 births per year in the United States. The prevalence of some heart defects, especially mild types, is increasing. The prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect. About 1 in 4 babies with a heart defect have a critical heart defect. Infants with critical heart defects generally need surgery or other procedures in their first year of life. The prevalence of all types of heart defects, including critical heart defects, varies by state and by type of defect. Heart defects are a leading cause of birth defect-associated infant illness and death. During 1999-2017, about 1 in every 814 deaths were attributable to heart defects in the United States. Nearly half (48%) of the deaths due to heart defects occurred during infancy (younger than 1 year of age). The complexity of their defect, presence of other birth defects and birthweight might impact their survival to young adulthood. In addition, CDC researchers found that a mother’s race and ethnicity might have contributed to survival. Therefore, factors such as access to care, systemic racism, and implicit bias may contribute to survival to young adulthood.

• #5 SciELO Brazil – Epidemiological study of congenital heart defects in children and adolescents: analysis of 4,538 cases Epidemiological study of congenital heart defects in children and adolescents: analysis of 4,538 cases

  https://www.scielo.br/j/abc/a/6F7RfW7PRhSR6y8ztqXZQrG/

  OBJECTIVE: To analyze the frequency and prevalence of congenital heart defects in a tertiary care center for children with heart diseases. […] Of all the children assessed, 2,017 (44.4%) were diagnosed with congenital heart disease, 201 (4.4%) with acquired heart disease, 52 (1.2%) with arrhythmias, and 2,268 (50%) were healthy children. Congenital heart diseases predominated in neonates and infants, corresponding to 71.5% of the cases. […] Ventricular septal defect was the most frequent acyanotic anomaly, and tetralogy of Fallot was the most frequent cyanotic anomaly. […] Children with congenital heart defects are mainly referred during the neonatal period and infancy with impairment in gaining weight. Ventricular septal defect is the most frequent heart defect. […] Congenital anomalies of the heart and great vessels are the most common severe congenital malformations, and they have high mortality in the first year of life.

• #6 Epidemiologic Study of Congenital Heart Diseases and Its Related Factors in Children Referred to the Pediatric Cardiac Clinic of Birjand University of Medical Sciences, Iran

  https://jpp.mums.ac.ir/article_13759.html

  Congenital heart disease is the most common type of maternal abnormality and is the leading cause of mortality in the first year of life. The aim of this study was to determine the epidemiological and related factors of congenital heart disease (CHD) in children referred to the pediatric heart clinic of Vali-e-Asr Hospital of Birjand, Iran. […] In this descriptive-analytical cross-sectional study, the study population included 300 patients with congenital heart disease who referred to the Vali-e-Asr Hospital, Birjand, Iran. […] The mean age of children with CHD at the time of diagnosis was 1.25 2.92 years. 156 (52%) were male. The most common type of CHD included ventricular septal defect (28.7%), patent ductus arteriosus (18.2%), and atrial septal defect (14.6%). […] There was a significant statistical difference between drug use in pregnancy, maternal age, age of patients, mother’s education level, place of residency, and familial relationship of parents and CHD in the children p0.05.

• #7 Epidemiologic Study of Congenital Heart Diseases and Its Related Factors in Children Referred to the Pediatric Cardiac Clinic of Birjand University of Medical Sciences, Iran

  https://jpp.mums.ac.ir/article_13759.html

  Congenital heart disease is the most common type of maternal abnormality and is the leading cause of mortality in the first year of life. The aim of this study was to determine the epidemiological and related factors of congenital heart disease (CHD) in children referred to the pediatric heart clinic of Vali-e-Asr Hospital of Birjand, Iran. […] In this descriptive-analytical cross-sectional study, the study population included 300 patients with congenital heart disease who referred to the Vali-e-Asr Hospital, Birjand, Iran. […] The mean age of children with CHD at the time of diagnosis was 1.25 2.92 years. 156 (52%) were male. The most common type of CHD included ventricular septal defect (28.7%), patent ductus arteriosus (18.2%), and atrial septal defect (14.6%). […] There was a significant statistical difference between drug use in pregnancy, maternal age, age of patients, mother’s education level, place of residency, and familial relationship of parents and CHD in the children p0.05.

• #8 Data and Statistics | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/data/index.html

  Heart defects are common. Every 15 minutes a baby is born with a heart defect in the U.S. Heart defects are common. Heart defects affect nearly 1% of about 40,000 births per year in the United States. The prevalence of some heart defects, especially mild types, is increasing. The prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect. About 1 in 4 babies with a heart defect have a critical heart defect. Infants with critical heart defects generally need surgery or other procedures in their first year of life. The prevalence of all types of heart defects, including critical heart defects, varies by state and by type of defect. Heart defects are a leading cause of birth defect-associated infant illness and death. During 1999-2017, about 1 in every 814 deaths were attributable to heart defects in the United States. Nearly half (48%) of the deaths due to heart defects occurred during infancy (younger than 1 year of age). The complexity of their defect, presence of other birth defects and birthweight might impact their survival to young adulthood. In addition, CDC researchers found that a mother’s race and ethnicity might have contributed to survival. Therefore, factors such as access to care, systemic racism, and implicit bias may contribute to survival to young adulthood.

• #9 Congenital Heart Disease in Adults | Doctor

  https://patient.info/doctor/congenital-heart-disease-in-adults

  How common is congenital heart disease? (Epidemiology) The prevalence of congenital heart disease worldwide is about 9 per 1000 births, with substantial geographic variation. […] While the prevalence of severe congenital heart defects is declining in many Western/developed countries due to fetal screening and pregnancy termination, overall prevalence on a global scale is increasing. […] Due to medical, surgical, and technological improvements over the past decades, over 90% of individuals who are born with congenital heart disease now survive into adulthood. As a result, the prevalence of adult congenital heart disease has increased and now by far exceeds the number of children with congenital heart disease.

• #10 Congenital Heart Disease in Adults | Doctor

  https://patient.info/doctor/congenital-heart-disease-in-adults

  How common is congenital heart disease? (Epidemiology) The prevalence of congenital heart disease worldwide is about 9 per 1000 births, with substantial geographic variation. […] While the prevalence of severe congenital heart defects is declining in many Western/developed countries due to fetal screening and pregnancy termination, overall prevalence on a global scale is increasing. […] Due to medical, surgical, and technological improvements over the past decades, over 90% of individuals who are born with congenital heart disease now survive into adulthood. As a result, the prevalence of adult congenital heart disease has increased and now by far exceeds the number of children with congenital heart disease.

• #11 Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7306355/

  Congenital heart disease (CHD) is the most commonly diagnosed congenital disorder in newborns. The incidence and mortality of CHD vary worldwide. A detailed understanding of the global, regional, and national distribution of CHD is critical for CHD prevention. […] The incidence of CHD was relatively high in developing countries located in Africa and Asia, while low in most developed countries. Between 1990 and 2017, the CHD incidence rate remained stable at the global level, whereas increased in certain developed countries, such as Germany and France. The age-standardized mortality rate of CHD declined substantially over the last 3 decades, regardless of sex, age, and SDI region. The decline was more prominent in developed countries. […] The incidence of CHD remained stable over the last 3 decades, suggesting little improvement in CHD prevention strategies and highlighting the importance of etiological studies. The mortality of CHD decreased worldwide, albeit the greatly geographical heterogeneity. Developing countries located in Africa and Asia deserve more attention and priority in the global CHD prevention program.

• #12 Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7306355/

  Congenital heart disease (CHD) is the most commonly diagnosed congenital disorder in newborns. The incidence and mortality of CHD vary worldwide. A detailed understanding of the global, regional, and national distribution of CHD is critical for CHD prevention. […] The incidence of CHD was relatively high in developing countries located in Africa and Asia, while low in most developed countries. Between 1990 and 2017, the CHD incidence rate remained stable at the global level, whereas increased in certain developed countries, such as Germany and France. The age-standardized mortality rate of CHD declined substantially over the last 3 decades, regardless of sex, age, and SDI region. The decline was more prominent in developed countries. […] The incidence of CHD remained stable over the last 3 decades, suggesting little improvement in CHD prevention strategies and highlighting the importance of etiological studies. The mortality of CHD decreased worldwide, albeit the greatly geographical heterogeneity. Developing countries located in Africa and Asia deserve more attention and priority in the global CHD prevention program.

• #13 Epidemiology of Congenital Heart Diseases | SpringerLink

  https://link.springer.com/chapter/10.1007/978-3-031-23062-2_2

  Understanding the epidemiology of congenital heart defects is crucial because of their high prevalence, their effect on the healthcare system, and the fact that better health policy recommendations can be derived from this knowledge. […] Despite recent improvements in surgical techniques and diagnostic tools, this major health issue continues to account for a high percentage of deaths and hospitalizations. […] It is possible that the varying prevalence of congenital heart defects across the globe is due to regional variations in multifactorial risk factors or to the unequal availability of healthcare services in some parts of the world. […] It is worth noting that there is substantial variation regarding the occurrence of the various major types of heart defects between different studies.

• #14 Epidemiology of Congenital Heart Disease in Qatar: Preliminary findings from the Sidra Medicine Cardiac Registry | medRxiv

  https://www.medrxiv.org/content/10.1101/2023.08.24.23294593v1

  The most common CHD type in this study was VSD followed by ASD. The rate of parental consanguinity was generally high among patients with CHDs. The pattern of non-genetic risk factors, comorbidities, and outcomes in patients with CHD was similar to those previously reported in other studies. […] Congenital heart diseases and other birth defects are largely understudied in Qatar. This study provides epidemiological characteristics of patients with congenital heart diseases in Qatar. […] This study highlights the association between parental consanguinity and the increased incidence of congenital heart diseases in Qatar, a country with a high rate of parental consanguinity.

• #15 Epidemiology of Congenital Heart Disease in Kazakhstan: Data from the Unified National Electronic Healthcare System 2014-2021

  https://www.clinmedkaz.org/article/epidemiology-of-congenital-heart-disease-in-kazakhstan-data-from-the-unified-national-electronic-14683

  The aim of this study was to investigate the epidemiology of congenital heart disease (CHD) in Kazakhstan, using the data from the Unified National Electronic Healthcare System (UNEHS) for the period of 2014-2021. This retrospective cohort study included all patients diagnosed with CHD in Kazakhstan and registered in the UNEHS between January 2014 and December 2021. CHDs were defined based on ICD-10 codes Q20-Q26. Incidence, prevalence, and all-cause mortality rates were calculated per 100,000 population. […] The cohort consisted of 68,371 CHD patients, of whom 61,285 (89.6%) had a single CHD type, 40,767 (59.6%) were diagnosed before the age of 1 year, and 5,225 (7.6%) died over the study period. Incidence of CHD decreased from 64.6 to 47.3 cases per 100,000 population in males, and from 68.7 to 42.5 cases in females between 2014 and 2020. All-cause mortality rates per 100,000 population increased from 3.3 to 4.7 cases among males, and from 2.7 to 3.7 among females between 2014 and 2020.

• #16 Data and Statistics | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/data/index.html

  Heart defects are common. Every 15 minutes a baby is born with a heart defect in the U.S. Heart defects are common. Heart defects affect nearly 1% of about 40,000 births per year in the United States. The prevalence of some heart defects, especially mild types, is increasing. The prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect. About 1 in 4 babies with a heart defect have a critical heart defect. Infants with critical heart defects generally need surgery or other procedures in their first year of life. The prevalence of all types of heart defects, including critical heart defects, varies by state and by type of defect. Heart defects are a leading cause of birth defect-associated infant illness and death. During 1999-2017, about 1 in every 814 deaths were attributable to heart defects in the United States. Nearly half (48%) of the deaths due to heart defects occurred during infancy (younger than 1 year of age). The complexity of their defect, presence of other birth defects and birthweight might impact their survival to young adulthood. In addition, CDC researchers found that a mother’s race and ethnicity might have contributed to survival. Therefore, factors such as access to care, systemic racism, and implicit bias may contribute to survival to young adulthood.

• #17 Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7306355/

  We found the mortality of CHD experienced a significant decline between 1990 and 2017 at the global level, regardless of sex, age, and SDI region. However, the mortality was substantially heterogeneous across the world, primarily due to the disequilibrium in economics and medical facilities. […] This inequality suggested that more attention and priority should be placed on these less developed regions to alleviate the burden of CHD worldwide. Additionally, more than 80% of CHD related deaths occurred in children aged under 5 years, which emphasized the importance of prevention and early screening for CHD again.

• #18 Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia – Neidenbach – Cardiovascular Dia

  https://cdt.amegroups.org/article/view/22846/html

  Today most patients with congenital heart defects (CHD) survive into adulthood. […] The reported incidence or birth prevalence of CHD largely depends on the study design and the lack of birth registries in many countries, ranging from five to eight per 1,000 live births before the introduction of echocardiography, and from eight to 12 per 1,000 thereafter. […] Although mortality of CHD has decreased considerably, morbidity remains substantial which is widely underestimated. […] Of note, medical care in specialized centers is able to significantly reduce mortality in children and adults with CHD. […] As many CHD-related problems manifest differently from acquired heart disease, established treatment regimens for acquired heart disease can only be applied to a limited extent to CHD. […] In summary, assessment and treatment of heart failure in CHD is challenging and requires special expertise as recommendations for acquired heart disease cannot be applied uncritically. […] In the field of CHD primary and secondary medical prevention will henceforth become increasingly important in order to reduce the burden of disease as well as the socioeconomic burden and costs.

• #19 Surveillance of adults with congenital heart disease: Current guidelines and actual clinical practice – PubMed

  https://pubmed.ncbi.nlm.nih.gov/38636602/

  Congenital heart disease (CHD) is the most common birth defect with prevalence of 0.8%. […] Thanks to tremendous progress in medical and surgical practice, nowadays, 90% of children survive into adulthood. […] Recently European Society of Cardiology (ESC), American College of Cardiology (ACC)/ American Heart Association (AHA) issued guidelines which offer diagnostic and therapeutic recommendations for the different defect categories. […] However, the type of technical exams and their frequency of follow-up may vary largely between clinicians and centres. […] We aimed to present an overview of available diagnostic modalities and describe current surveillance practices by cardiologists taking care of adults with CHD (ACHD). […] Differences exist between reported current clinical practice and published guidelines. […] This is particularly true for the care of patients with mild lesions. […] In addition, some differences exist between ESC and American guidelines, with more frequent surveillance suggested by the Americans.

• #20 The changing epidemiology of congenital heart disease | Nature Reviews Cardiology

  https://www.nature.com/articles/nrcardio.2010.166

  Congenital heart disease is the most common congenital disorder in newborns. Advances in cardiovascular medicine and surgery have enabled most patients to reach adulthood. […] Birth prevalence estimates vary widely according to different studies, but this measure seems to be declining overall. The prevalence of congenital heart disease is increasing. The reported prevalence does not reflect the number of patients currently receiving care for congenital heart disease. […] Epidemiological studies in congenital heart disease are hampered by diverging definitions, classifications, and methodology.

• #21 Congenital Heart Disease in Adults | Doctor

  https://patient.info/doctor/congenital-heart-disease-in-adults

  How common is congenital heart disease? (Epidemiology) The prevalence of congenital heart disease worldwide is about 9 per 1000 births, with substantial geographic variation. […] While the prevalence of severe congenital heart defects is declining in many Western/developed countries due to fetal screening and pregnancy termination, overall prevalence on a global scale is increasing. […] Due to medical, surgical, and technological improvements over the past decades, over 90% of individuals who are born with congenital heart disease now survive into adulthood. As a result, the prevalence of adult congenital heart disease has increased and now by far exceeds the number of children with congenital heart disease.

• #22 Congenital Heart Defects

  https://www.health.ny.gov/diseases/birth_defects/chd.htm

  Congenital Heart Defects (CHDs) are the most common birth defects, occurring in about 1 in 110 births. […] Nearly 40,000 infants are born with CHDs each year in the United States. CHDs affect the structure and function of the heart, including how blood flows through the heart and out to the rest of the body. Common examples include holes in different areas of the heart and narrow or leaky valves. […] Of the 2.4 million people in the U.S. living with a CHD, more than half are adults, and that number is expected to rise 5% every year. However, adults with CHDs have 3 4 times higher rates of Emergency Room visits, hospitalizations, and Intensive Care Unit stays than the general population. […] CHDs are the most common birth defects that cause infant death. While most causes of CHDs are unknown, there may be prevention activities that prospective mothers (and fathers) can do to help increase the chance of having a baby with a healthy heart.

• #23 Tracking and Research | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/research/index.html

  CDC is working to identify causes of heart defects and improve the health of those living with these conditions. […] Birth defects tracking programs collect information about babies born with heart defects to learn more about these conditions. This information enables scientists to determine where and when birth defects occur and whom they affect. […] CDC supports several specific birth defects tracking efforts to collect information on birth defects, including heart defects. Data collected through these programs inform prevention and referral to care activities. […] Since 2012, CDC and partners have been building the infrastructure and methods to collect information on children, teens, and adults living with heart defects. These efforts help us better understand survival, healthcare use, reproductive health, and longer-term outcomes of people living with these conditions.

• #24 Tracking and Research | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/research/index.html

  CDC is working to identify causes of heart defects and improve the health of those living with these conditions. […] Birth defects tracking programs collect information about babies born with heart defects to learn more about these conditions. This information enables scientists to determine where and when birth defects occur and whom they affect. […] CDC supports several specific birth defects tracking efforts to collect information on birth defects, including heart defects. Data collected through these programs inform prevention and referral to care activities. […] Since 2012, CDC and partners have been building the infrastructure and methods to collect information on children, teens, and adults living with heart defects. These efforts help us better understand survival, healthcare use, reproductive health, and longer-term outcomes of people living with these conditions.

• #25 Tracking and Research | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/research/index.html

  In 2024, CDC funded six sites for a second phase of the Congenital Heart Defects Surveillance across Time And Regions project (CHD STAR2). […] CDC will fund these sites until 2029 to continue examining outcomes among children, teens, and adults with heart defects. […] CDC funds two large studies, the National Birth Defects Prevention Study (NBDPS) and the Birth Defects Study to Evaluate Pregnancy exposureS (BD-STEPS). These studies identify factors that increase or decrease the risk for having a baby with a birth defect, including heart defects.

• #26 CHD STAR – Iowa Registry for Congenital and Inherited Disorders

  https://ircid.public-health.uiowa.edu/home/surveillance/congenital-heart-defect-surveillance/

  Congenital Heart Defects Surveillance Across Time And Regions (CHD STAR) is a CDC-funded surveillance program that is currently active in 7 states (Arizona, Georgia, Iowa, New York, North Carolina, South Carolina, and Utah). The goals of CHD STAR are to examine survival, healthcare utilization, co-occurring conditions, and other outcomes over time. Improved understanding of the public health significance of CHDs can lead to improved strategies to decrease mortality and improve the health of people affected by CHDs. […] On behalf of CHD STAR, IRCID conducts population-based surveillance of children, adolescents, and adults with congenital heart defects. Most current efforts to conduct population-based surveillance have focused on newborns, and limited population information is available on CHDs past early childhood. CHD STAR strives to better understand experiences and health outcomes related to health equity and identify opportunities to improve the health of people with CHDs.

• #27 Tracking and Research | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/research/index.html

  In 2024, CDC funded six sites for a second phase of the Congenital Heart Defects Surveillance across Time And Regions project (CHD STAR2). […] CDC will fund these sites until 2029 to continue examining outcomes among children, teens, and adults with heart defects. […] CDC funds two large studies, the National Birth Defects Prevention Study (NBDPS) and the Birth Defects Study to Evaluate Pregnancy exposureS (BD-STEPS). These studies identify factors that increase or decrease the risk for having a baby with a birth defect, including heart defects.

• #28 Surveillance program for patients with congenital heart disease a success – CHOC Pediatrica

  https://care.choc.org/surveillance-program-for-patients-with-congenital-heart-disease-a-success/

  Surveillance program for patients with congenital heart disease a success […] A standardized surveillance program for children with congenital heart disease (CHD) as they grow to adulthood is proving to be very successful, according to a study that illustrates CHOC’s evolving reputation as a leader in cardiac neurodevelopmental services — nationally and abroad. […] Launched in July 2022, the program monitors children born with serious heart defects who, as they develop, have a high risk of experiencing developmental delays, cognitive impairments, learning disorders, ADHD, autism, and mental health difficulties, and ensures these children are referred to the CHOC Heart Institute’s Cardiac Neurodevelopmental Clinic (CNC). […] Monitoring newborns with complex CHD as they transition to adolescence and adulthood has become increasingly important because such patients are living longer due to advances over the last decades in surgical techniques and medical therapies. […] CHD affects 40,000 newborns each year, making it one of the most common developmental abnormalities. Over 90 percent of children with CHD are expected to survive into adulthood. […] Results of the CHD surveillance program have demonstrated a significantly high proportion of completed referrals for patients identifying as Hispanic/Latino within the overall distribution of patients, Dr. Tan said. […] Implementation of a standardized surveillance program with appropriately translated materials, attention to health literacy, and collaboration with parents in the referral process was especially critical for patients from historically marginalized groups, he added. […] More studies on the efficacy of the surveillance program and the neurodevelopmental outcomes found as a result will be forthcoming as additional data comes in, Dr. Tan noted. […] To date, more than 200 patients are participating in the surveillance program, he said. […] We hope our surveillance program can be a model for programs across the country of how we can find innovative ways to improve our education about cardiac neurodevelopment for these families and help connect them to all the services and supports their children need.

• #29 Surveillance program for patients with congenital heart disease a success – CHOC Pediatrica

  https://care.choc.org/surveillance-program-for-patients-with-congenital-heart-disease-a-success/

  Surveillance program for patients with congenital heart disease a success […] A standardized surveillance program for children with congenital heart disease (CHD) as they grow to adulthood is proving to be very successful, according to a study that illustrates CHOC’s evolving reputation as a leader in cardiac neurodevelopmental services — nationally and abroad. […] Launched in July 2022, the program monitors children born with serious heart defects who, as they develop, have a high risk of experiencing developmental delays, cognitive impairments, learning disorders, ADHD, autism, and mental health difficulties, and ensures these children are referred to the CHOC Heart Institute’s Cardiac Neurodevelopmental Clinic (CNC). […] Monitoring newborns with complex CHD as they transition to adolescence and adulthood has become increasingly important because such patients are living longer due to advances over the last decades in surgical techniques and medical therapies. […] CHD affects 40,000 newborns each year, making it one of the most common developmental abnormalities. Over 90 percent of children with CHD are expected to survive into adulthood. […] Results of the CHD surveillance program have demonstrated a significantly high proportion of completed referrals for patients identifying as Hispanic/Latino within the overall distribution of patients, Dr. Tan said. […] Implementation of a standardized surveillance program with appropriately translated materials, attention to health literacy, and collaboration with parents in the referral process was especially critical for patients from historically marginalized groups, he added. […] More studies on the efficacy of the surveillance program and the neurodevelopmental outcomes found as a result will be forthcoming as additional data comes in, Dr. Tan noted. […] To date, more than 200 patients are participating in the surveillance program, he said. […] We hope our surveillance program can be a model for programs across the country of how we can find innovative ways to improve our education about cardiac neurodevelopment for these families and help connect them to all the services and supports their children need.

• #30 42 USC 280g-13: National Congenital Heart Disease Surveillance System

  https://uscode.house.gov/view.xhtml;jsessionid=BAFEAC01AFBFCAA51340D175453A1350?path=&req=granuleid%3AUSC-2010-title42-section280g-13&f=&fq=&num=0&hl=false&edition=2010

  The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may enhance and expand infrastructure to track the epidemiology of congenital heart disease and to organize such information into a nationally-representative, population-based surveillance system that compiles data concerning actual occurrences of congenital heart disease, to be known as the „National Congenital Heart Disease Surveillance System”; or […] The purpose of the Congenital Heart Disease Surveillance System shall be to facilitate further research into the types of health services patients use and to identify possible areas for educational outreach and prevention in accordance with standard practices of the Centers for Disease Control and Prevention. […] The Congenital Heart Disease Surveillance System may include information concerning the incidence and prevalence of congenital heart disease in the United States;

• #31 42 U.S. Code § 280g-13 – National congenital heart disease research, surveillance, and awareness | U.S. Code | US Law | LII / Legal Information Institute

  https://www.law.cornell.edu/uscode/text/42/280g-13

  The Secretary shall, as appropriate (1) enhance and expand research and data collection efforts related to congenital heart disease, including to study and track the epidemiology of congenital heart disease to understand health outcomes for individuals with congenital heart disease across all ages; […] The Secretary shall carry out activities, including, as appropriate, through a national cohort study and a nationally-representative, population-based surveillance system, to improve the understanding of the epidemiology of congenital heart disease in all age groups, with particular attention to (A) the incidence and prevalence of congenital heart disease in the United States; (B) causation and risk factors associated with, and natural history of, congenital heart disease; (C) health care utilization by individuals with congenital heart disease; (D) demographic factors associated with congenital heart disease, such as age, race, ethnicity, sex, and family history of individuals who are diagnosed with the disease; and (E) evidence-based practices related to care and treatment for individuals with congenital heart disease.

• #32 Intelligent platform for surveillance of neonatal congenital heart disease: big data and parental self-report based innovative strategies – Lu – Pediatric Medicine

  https://pm.amegroups.org/article/view/7587/html

  The neonatal congenital heart disease (NCHD) screening program has advanced in China. However, there are still some missed cases after discharge from maternity hospitals. Moreover, parents cognitive level and compliance with congenital heart disease (CHD) management are limited. The current disease reporting system, which relies on medical personnel, encounters issues with data omission and misreporting, exacerbated by the manual follow-up processs inefficiency. Involving parents in NCHD management mitigates challenges arising from population mobility, deepens parents comprehension of the disease, and promotes active data input, ultimately enhancing health management efficiency. […] The platform demonstrated successful integration across the entire CHD management spectrum, including Parent Registration, Screening Phase, Diagnosis Phase, and Treatment Phase.

• #33 Intelligent platform for surveillance of neonatal congenital heart disease: big data and parental self-report based innovative strategies – Lu – Pediatric Medicine

  https://pm.amegroups.org/article/view/7587/html

  Our big data management platform for NCHD screening, diagnosis, treatment, and follow-up is the first intelligent management platform for the whole process to be established and incorporated into the self-report and management of parents. Reliable big data of NCHD screening, diagnosis, treatment, and follow-up can be obtained, which can dynamically summarize and analyze the incidence, operation, cure, and survival rates, of NCHD, answer, the false-negative rate, and the cost-efficiency of NCHD screening.

• #34 The changing epidemiology of congenital heart disease | Nature Reviews Cardiology

  https://www.nature.com/articles/nrcardio.2010.166

  Congenital heart disease is the most common congenital disorder in newborns. Advances in cardiovascular medicine and surgery have enabled most patients to reach adulthood. […] Birth prevalence estimates vary widely according to different studies, but this measure seems to be declining overall. The prevalence of congenital heart disease is increasing. The reported prevalence does not reflect the number of patients currently receiving care for congenital heart disease. […] Epidemiological studies in congenital heart disease are hampered by diverging definitions, classifications, and methodology.

• #35 The changing epidemiology of congenital heart disease | Nature Reviews Cardiology

  https://www.nature.com/articles/nrcardio.2010.166

  Congenital heart disease is the most common congenital disorder in newborns. Advances in cardiovascular medicine and surgery have enabled most patients to reach adulthood. […] Birth prevalence estimates vary widely according to different studies, but this measure seems to be declining overall. The prevalence of congenital heart disease is increasing. The reported prevalence does not reflect the number of patients currently receiving care for congenital heart disease. […] Epidemiological studies in congenital heart disease are hampered by diverging definitions, classifications, and methodology.

• #36 Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults | Research Funding

  https://researchfunding.duke.edu/surveillance-congenital-heart-defects-among-children-adolescents-and-adults

  NOFO # DD24-0051 solicits non-research, cooperative agreement applications to conduct population-based surveillance of congenital heart defects (CHD) to describe health outcomes including health equity, with the goal of identifying opportunities to improve the health of all people living with CHD. […] Congenital heart defects (CHD) affect about 1% of all births in the United States, and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs. […] Most current efforts to conduct population-based surveillance of CHD have focused on monitoring newborns. However, little data exist on the descriptive epidemiology of CHD beyond early childhood in the U.S. […] Despite the public health burden, the lack of population-based surveillance precludes reliable data on people with CHD, their survival, healthcare utilization, and characteristics associated with long-term outcomes. […] Through this surveillance activity, these data will be assessed, enabling and informing efforts to improve the health and well-being of people with CHD.

• #37 Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults | Research Funding

  https://researchfunding.duke.edu/surveillance-congenital-heart-defects-among-children-adolescents-and-adults

  NOFO # DD24-0051 solicits non-research, cooperative agreement applications to conduct population-based surveillance of congenital heart defects (CHD) to describe health outcomes including health equity, with the goal of identifying opportunities to improve the health of all people living with CHD. […] Congenital heart defects (CHD) affect about 1% of all births in the United States, and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs. […] Most current efforts to conduct population-based surveillance of CHD have focused on monitoring newborns. However, little data exist on the descriptive epidemiology of CHD beyond early childhood in the U.S. […] Despite the public health burden, the lack of population-based surveillance precludes reliable data on people with CHD, their survival, healthcare utilization, and characteristics associated with long-term outcomes. […] Through this surveillance activity, these data will be assessed, enabling and informing efforts to improve the health and well-being of people with CHD.

• #38 WHO EMRO | Congenital heart disease in Saudi Arabia: current epidemiology and future projections | Volume 12, supplement 2 | EMHJ volume 12, 2006

  https://www.emro.who.int/emhj-volume-12-2006/volume-12-supplement-2/congenital-heart-disease-in-saudi-arabia-current-epidemiology-and-future-projections.html

  To provide an overview of the epidemiology of congenital heart disease, the results of epidemiological studies done in 4 regions of Saudi Arabia (August 1988-February 2000) and 2604 individuals with congenital heart disease were evaluated. […] The epidemiology of congenital heart disease in Saudi Arabia has not been determined, nor has it received the attention it warrants. Only scattered efforts have been made in 4 regions. These were done over different time periods and using different methodologies. This study aimed at utilizing the results of these studies to establish the epidemiology of congenital heart disease in Saudi Arabia. […] Knowledge of the epidemiology of congenital heart disease is the basis on which investigative efforts will emerge to identify the causes of cardiac dysmorphogenesis and afford opportunities to prevent them.

• #39 Congenital Heart Defect (CHD) Databases for Surveillance, Research and Innovation

  https://www.aap.org/en/patient-care/congenital-heart-defects/congenital-heart-defect-chd-databases-for-surveillance-research-and-innovation/?srsltid=AfmBOooFR4yP5k4KUKq0HlBnoAttsjRgTv4gCO_SSqWC9of1ZTBA-EEc

  Databases for Congenital Heart Defect Public Health Studies Across the Lifespan (Riehle-Colarusso T, et. al. JAHA 2016) describes the wealth of data already being collected by a number of different databases and registries encompassing many aspects of overall cardiac care. […] CHD Surveillance Ability to systematically monitor prevalence data on CHD. […] The article Public Health Science Agenda for CHD: Report from the Centers for Disease Control and Prevention Experts Meeting (Oster M, et. al. J Am Heart Assoc., 2013) identifies several strategies to address gaps in public health knowledge as related to CHD. […] A clear outcome of efforts to link databases is the ability to leverage the above mentioned wealth of data that is already being collected. […] Furthermore, while there are no population-based databases that are individually tracking long-term outcomes, merging information across databases over time may be able to provide valuable long-term outcomes data. […] In addition to learning about patient-level outcomes for persons with CHDs, successful linkage of these databases may help identify benchmarks for care and inform screening and prevention efforts.

• #40 Congenital Heart Defect (CHD) Databases for Surveillance, Research and Innovation

  https://www.aap.org/en/patient-care/congenital-heart-defects/congenital-heart-defect-chd-databases-for-surveillance-research-and-innovation/?srsltid=AfmBOooFR4yP5k4KUKq0HlBnoAttsjRgTv4gCO_SSqWC9of1ZTBA-EEc

  Databases for Congenital Heart Defect Public Health Studies Across the Lifespan (Riehle-Colarusso T, et. al. JAHA 2016) describes the wealth of data already being collected by a number of different databases and registries encompassing many aspects of overall cardiac care. […] CHD Surveillance Ability to systematically monitor prevalence data on CHD. […] The article Public Health Science Agenda for CHD: Report from the Centers for Disease Control and Prevention Experts Meeting (Oster M, et. al. J Am Heart Assoc., 2013) identifies several strategies to address gaps in public health knowledge as related to CHD. […] A clear outcome of efforts to link databases is the ability to leverage the above mentioned wealth of data that is already being collected. […] Furthermore, while there are no population-based databases that are individually tracking long-term outcomes, merging information across databases over time may be able to provide valuable long-term outcomes data. […] In addition to learning about patient-level outcomes for persons with CHDs, successful linkage of these databases may help identify benchmarks for care and inform screening and prevention efforts.

• #41 Congenital Heart Defect (CHD) Databases for Surveillance, Research and Innovation

  https://www.aap.org/en/patient-care/congenital-heart-defects/congenital-heart-defect-chd-databases-for-surveillance-research-and-innovation/?srsltid=AfmBOooFR4yP5k4KUKq0HlBnoAttsjRgTv4gCO_SSqWC9of1ZTBA-EEc

  Databases for Congenital Heart Defect Public Health Studies Across the Lifespan (Riehle-Colarusso T, et. al. JAHA 2016) describes the wealth of data already being collected by a number of different databases and registries encompassing many aspects of overall cardiac care. […] CHD Surveillance Ability to systematically monitor prevalence data on CHD. […] The article Public Health Science Agenda for CHD: Report from the Centers for Disease Control and Prevention Experts Meeting (Oster M, et. al. J Am Heart Assoc., 2013) identifies several strategies to address gaps in public health knowledge as related to CHD. […] A clear outcome of efforts to link databases is the ability to leverage the above mentioned wealth of data that is already being collected. […] Furthermore, while there are no population-based databases that are individually tracking long-term outcomes, merging information across databases over time may be able to provide valuable long-term outcomes data. […] In addition to learning about patient-level outcomes for persons with CHDs, successful linkage of these databases may help identify benchmarks for care and inform screening and prevention efforts.

• #42 Congenital Heart Defect (CHD) Databases for Surveillance, Research and Innovation

  https://www.aap.org/en/patient-care/congenital-heart-defects/congenital-heart-defect-chd-databases-for-surveillance-research-and-innovation/?srsltid=AfmBOooFR4yP5k4KUKq0HlBnoAttsjRgTv4gCO_SSqWC9of1ZTBA-EEc

  Databases for Congenital Heart Defect Public Health Studies Across the Lifespan (Riehle-Colarusso T, et. al. JAHA 2016) describes the wealth of data already being collected by a number of different databases and registries encompassing many aspects of overall cardiac care. […] CHD Surveillance Ability to systematically monitor prevalence data on CHD. […] The article Public Health Science Agenda for CHD: Report from the Centers for Disease Control and Prevention Experts Meeting (Oster M, et. al. J Am Heart Assoc., 2013) identifies several strategies to address gaps in public health knowledge as related to CHD. […] A clear outcome of efforts to link databases is the ability to leverage the above mentioned wealth of data that is already being collected. […] Furthermore, while there are no population-based databases that are individually tracking long-term outcomes, merging information across databases over time may be able to provide valuable long-term outcomes data. […] In addition to learning about patient-level outcomes for persons with CHDs, successful linkage of these databases may help identify benchmarks for care and inform screening and prevention efforts.

• #43 Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults | Nature Reviews Cardiology

  https://www.nature.com/articles/s41569-022-00749-y

  The epidemiology of congenital heart disease (CHD) has changed in the past 50 years as a result of an increase in the prevalence and survival rate of CHD. […] Measurable changes in the prevalence of congenital heart disease (CHD) in the past decades are the result of evolving trends in birth prevalence and survival of patients over time. […] Changes in birth prevalence over time and by region are, at least in part, attributable to variations in the availability of diagnostic tools and ascertainment. […] Despite regional variations, the survival rates of patients with CHD have improved globally as evidenced by an increasing median age of CHD populations. […] With prolonged survival among patients with CHD, the disease burden is shifting away from the heart and towards acquired cardiovascular and systemic complications throughout the lifespan.

• #44 Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults | Nature Reviews Cardiology

  https://www.nature.com/articles/s41569-022-00749-y

  The epidemiology of congenital heart disease (CHD) has changed in the past 50 years as a result of an increase in the prevalence and survival rate of CHD. […] Measurable changes in the prevalence of congenital heart disease (CHD) in the past decades are the result of evolving trends in birth prevalence and survival of patients over time. […] Changes in birth prevalence over time and by region are, at least in part, attributable to variations in the availability of diagnostic tools and ascertainment. […] Despite regional variations, the survival rates of patients with CHD have improved globally as evidenced by an increasing median age of CHD populations. […] With prolonged survival among patients with CHD, the disease burden is shifting away from the heart and towards acquired cardiovascular and systemic complications throughout the lifespan.

• #45 Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults | Nature Reviews Cardiology

  https://www.nature.com/articles/s41569-022-00749-y

  The epidemiology of congenital heart disease (CHD) has changed in the past 50 years as a result of an increase in the prevalence and survival rate of CHD. […] Measurable changes in the prevalence of congenital heart disease (CHD) in the past decades are the result of evolving trends in birth prevalence and survival of patients over time. […] Changes in birth prevalence over time and by region are, at least in part, attributable to variations in the availability of diagnostic tools and ascertainment. […] Despite regional variations, the survival rates of patients with CHD have improved globally as evidenced by an increasing median age of CHD populations. […] With prolonged survival among patients with CHD, the disease burden is shifting away from the heart and towards acquired cardiovascular and systemic complications throughout the lifespan.

• #46 OP29 The prevalence of congenital heart disease in the UK: a population-based register study | Journal of Epidemiology & Community Health

  https://jech.bmj.com/content/68/Suppl_1/A17.1

  The aim of this study was to investigate the epidemiology of CHD, including trends in severe, moderate and mild CHD in the UK. […] There were no significant trends in moderate (RR=1.02, 95% CI: 0.99-1.04; p = 0.195) or severe CHD (RR=1.01, 95% CI: 1.00-1.03; p = 0.065), but there was a significant increase in the prevalence of mild CHD (RR=1.05, 95% CI: 1.01-1.10; p = 0.029). […] This information is important for healthcare planning.

• #47 Population-based estimates of the prevalence of children with congenital heart disease and associated comorbidities | medRxiv

  https://www.medrxiv.org/content/10.1101/2023.06.29.23292065v1.full-text

  Congenital heart defects (CHD) are the most common birth defects and are estimated to affect almost 1% of births annually in the US. CHDs are the leading cause of infant mortality associated with birth defects and can result in chronic disability, morbidity and increased healthcare costs. Most CHD prevalence estimates rely on data from population-based birth defects surveillance systems and these estimates are inconsistent due to varied definitions. It is therefore important to derive high-quality, population-based estimates of the prevalence of CHD to help care for this vulnerable population. […] We present the first U.S. population-based study to longitudinally estimate the prevalence and comorbidity burden of children diagnosed with CHD in the U.S. During 2012 to 2019, there were 30,512 children identified with CHD in CO, comprising 1.9% of the pediatric population. In comparison with previously reported estimates, our higher reported prevalence may be explained by the inclusion of children with concurrent genetic abnormalities, which have not been previously accounted for, as well as diagnoses captured after infancy. Our study summarizes the significant and complex health burden that children with CHD frequently experience, with more than half having at least one comorbid condition and 45% have multiple.

• #48 Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults | Nature Reviews Cardiology

  https://www.nature.com/articles/s41569-022-00749-y

  The epidemiology of congenital heart disease (CHD) has changed in the past 50 years as a result of an increase in the prevalence and survival rate of CHD. […] Measurable changes in the prevalence of congenital heart disease (CHD) in the past decades are the result of evolving trends in birth prevalence and survival of patients over time. […] Changes in birth prevalence over time and by region are, at least in part, attributable to variations in the availability of diagnostic tools and ascertainment. […] Despite regional variations, the survival rates of patients with CHD have improved globally as evidenced by an increasing median age of CHD populations. […] With prolonged survival among patients with CHD, the disease burden is shifting away from the heart and towards acquired cardiovascular and systemic complications throughout the lifespan.

• #49 Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults | Nature Reviews Cardiology

  https://www.nature.com/articles/s41569-022-00749-y

  The epidemiology of congenital heart disease (CHD) has changed in the past 50 years as a result of an increase in the prevalence and survival rate of CHD. […] Measurable changes in the prevalence of congenital heart disease (CHD) in the past decades are the result of evolving trends in birth prevalence and survival of patients over time. […] Changes in birth prevalence over time and by region are, at least in part, attributable to variations in the availability of diagnostic tools and ascertainment. […] Despite regional variations, the survival rates of patients with CHD have improved globally as evidenced by an increasing median age of CHD populations. […] With prolonged survival among patients with CHD, the disease burden is shifting away from the heart and towards acquired cardiovascular and systemic complications throughout the lifespan.

• #50 Surveillance program for patients with congenital heart disease a success – CHOC Pediatrica

  https://care.choc.org/surveillance-program-for-patients-with-congenital-heart-disease-a-success/

  Surveillance program for patients with congenital heart disease a success […] A standardized surveillance program for children with congenital heart disease (CHD) as they grow to adulthood is proving to be very successful, according to a study that illustrates CHOC’s evolving reputation as a leader in cardiac neurodevelopmental services — nationally and abroad. […] Launched in July 2022, the program monitors children born with serious heart defects who, as they develop, have a high risk of experiencing developmental delays, cognitive impairments, learning disorders, ADHD, autism, and mental health difficulties, and ensures these children are referred to the CHOC Heart Institute’s Cardiac Neurodevelopmental Clinic (CNC). […] Monitoring newborns with complex CHD as they transition to adolescence and adulthood has become increasingly important because such patients are living longer due to advances over the last decades in surgical techniques and medical therapies. […] CHD affects 40,000 newborns each year, making it one of the most common developmental abnormalities. Over 90 percent of children with CHD are expected to survive into adulthood. […] Results of the CHD surveillance program have demonstrated a significantly high proportion of completed referrals for patients identifying as Hispanic/Latino within the overall distribution of patients, Dr. Tan said. […] Implementation of a standardized surveillance program with appropriately translated materials, attention to health literacy, and collaboration with parents in the referral process was especially critical for patients from historically marginalized groups, he added. […] More studies on the efficacy of the surveillance program and the neurodevelopmental outcomes found as a result will be forthcoming as additional data comes in, Dr. Tan noted. […] To date, more than 200 patients are participating in the surveillance program, he said. […] We hope our surveillance program can be a model for programs across the country of how we can find innovative ways to improve our education about cardiac neurodevelopment for these families and help connect them to all the services and supports their children need.

• #51 Mayo Clinic Q&A podcast: The silent defects of congenital heart disease need lifelong surveillance – Mayo Clinic News Network

  https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-qa-podcast-the-silent-defects-of-congenital-heart-disease-need-lifelong-surveillance/

  Children and adults with congenital heart disease need complex, multifaceted care for continued survival and quality of life. […] „These heart defects may be silent when a child is born and might only surface as the person gets older,” says Dr. David Majdalany, a Mayo Clinic cardiologist. […] „They think they have no further need for cardiac surveillance, so they fall off the radar of getting followed because they feel so good,” says Dr. Majdalany. […] He also details the intricacies and seriousness of congenital heart disease, emphasizing the need for good transitioning from pediatric care to adult cardiovascular care.

• #52 Epidemiology of Congenital Heart Diseases | SpringerLink

  https://link.springer.com/chapter/10.1007/978-3-031-23062-2_2

  Understanding the epidemiology of congenital heart defects is crucial because of their high prevalence, their effect on the healthcare system, and the fact that better health policy recommendations can be derived from this knowledge. […] Despite recent improvements in surgical techniques and diagnostic tools, this major health issue continues to account for a high percentage of deaths and hospitalizations. […] It is possible that the varying prevalence of congenital heart defects across the globe is due to regional variations in multifactorial risk factors or to the unequal availability of healthcare services in some parts of the world. […] It is worth noting that there is substantial variation regarding the occurrence of the various major types of heart defects between different studies.

• #53 Epidemiology of Congenital Heart Diseases | SpringerLink

  https://link.springer.com/chapter/10.1007/978-3-031-23062-2_2

  Understanding the epidemiology of congenital heart defects is crucial because of their high prevalence, their effect on the healthcare system, and the fact that better health policy recommendations can be derived from this knowledge. […] Despite recent improvements in surgical techniques and diagnostic tools, this major health issue continues to account for a high percentage of deaths and hospitalizations. […] It is possible that the varying prevalence of congenital heart defects across the globe is due to regional variations in multifactorial risk factors or to the unequal availability of healthcare services in some parts of the world. […] It is worth noting that there is substantial variation regarding the occurrence of the various major types of heart defects between different studies.

• #54 Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults | Research Funding

  https://researchfunding.duke.edu/surveillance-congenital-heart-defects-among-children-adolescents-and-adults

  NOFO # DD24-0051 solicits non-research, cooperative agreement applications to conduct population-based surveillance of congenital heart defects (CHD) to describe health outcomes including health equity, with the goal of identifying opportunities to improve the health of all people living with CHD. […] Congenital heart defects (CHD) affect about 1% of all births in the United States, and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs. […] Most current efforts to conduct population-based surveillance of CHD have focused on monitoring newborns. However, little data exist on the descriptive epidemiology of CHD beyond early childhood in the U.S. […] Despite the public health burden, the lack of population-based surveillance precludes reliable data on people with CHD, their survival, healthcare utilization, and characteristics associated with long-term outcomes. […] Through this surveillance activity, these data will be assessed, enabling and informing efforts to improve the health and well-being of people with CHD.

• #55 WHO EMRO | Congenital heart disease in Saudi Arabia: current epidemiology and future projections | Volume 12, supplement 2 | EMHJ volume 12, 2006

  https://www.emro.who.int/emhj-volume-12-2006/volume-12-supplement-2/congenital-heart-disease-in-saudi-arabia-current-epidemiology-and-future-projections.html

  To provide an overview of the epidemiology of congenital heart disease, the results of epidemiological studies done in 4 regions of Saudi Arabia (August 1988-February 2000) and 2604 individuals with congenital heart disease were evaluated. […] The epidemiology of congenital heart disease in Saudi Arabia has not been determined, nor has it received the attention it warrants. Only scattered efforts have been made in 4 regions. These were done over different time periods and using different methodologies. This study aimed at utilizing the results of these studies to establish the epidemiology of congenital heart disease in Saudi Arabia. […] Knowledge of the epidemiology of congenital heart disease is the basis on which investigative efforts will emerge to identify the causes of cardiac dysmorphogenesis and afford opportunities to prevent them.

• #56 Population-based estimates of the prevalence of children with congenital heart disease and associated comorbidities | medRxiv

  https://www.medrxiv.org/content/10.1101/2023.06.29.23292065v1.full-text

  Knowledge of prevalence patterns of CHDs is important for improving our understanding of the magnitude of the disease, in both the population and extent of care necessary for children with CHD. An accurate assessment of the absolute and relative burden of CHD, as well as related comorbidities, on a population-based scale will support appropriate allocation of resources for diagnosis, care coordination, care access and cost-effective treatment strategies.

• #57

  http://benthamscience.com/public/chapter/977

  Congenital heart defects (CHD) are among the most common birth defects, occurring in 5 to 10 per 1000 live births. This substantial variation in the reported epidemiology of CHD is due to differences in applied methodologies. An increasing total prevalence of CHD has been recently reported, mainly due to increase in prevalence of small defects easily diagnosed by echocardiography, as well as an increase in prevalence of conotruncal defects and atrioventricular septal defects. In order to provide a comprehensive epidemiological overview, future studies should use international classification system as well as consistent inclusion and exclusion criteria. Futher studies are also required to evaluate precisely the impact of fetal cardiac diagnosis on the prevalence and outcome of CHD. Epidemiology of CHD provides an overview of the distribution and characteristics of risk factors. Environmental potential risk factors are reviewed as they may provide an opportunity for prevention of some forms of CHD.

• #58

  http://benthamscience.com/public/chapter/977

  Congenital heart defects (CHD) are among the most common birth defects, occurring in 5 to 10 per 1000 live births. This substantial variation in the reported epidemiology of CHD is due to differences in applied methodologies. An increasing total prevalence of CHD has been recently reported, mainly due to increase in prevalence of small defects easily diagnosed by echocardiography, as well as an increase in prevalence of conotruncal defects and atrioventricular septal defects. In order to provide a comprehensive epidemiological overview, future studies should use international classification system as well as consistent inclusion and exclusion criteria. Futher studies are also required to evaluate precisely the impact of fetal cardiac diagnosis on the prevalence and outcome of CHD. Epidemiology of CHD provides an overview of the distribution and characteristics of risk factors. Environmental potential risk factors are reviewed as they may provide an opportunity for prevention of some forms of CHD.

• #59 Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia – Neidenbach – Cardiovascular Dia

  https://cdt.amegroups.org/article/view/22846/html

  Today most patients with congenital heart defects (CHD) survive into adulthood. […] The reported incidence or birth prevalence of CHD largely depends on the study design and the lack of birth registries in many countries, ranging from five to eight per 1,000 live births before the introduction of echocardiography, and from eight to 12 per 1,000 thereafter. […] Although mortality of CHD has decreased considerably, morbidity remains substantial which is widely underestimated. […] Of note, medical care in specialized centers is able to significantly reduce mortality in children and adults with CHD. […] As many CHD-related problems manifest differently from acquired heart disease, established treatment regimens for acquired heart disease can only be applied to a limited extent to CHD. […] In summary, assessment and treatment of heart failure in CHD is challenging and requires special expertise as recommendations for acquired heart disease cannot be applied uncritically. […] In the field of CHD primary and secondary medical prevention will henceforth become increasingly important in order to reduce the burden of disease as well as the socioeconomic burden and costs.

• #60 CHD STAR – Iowa Registry for Congenital and Inherited Disorders

  https://ircid.public-health.uiowa.edu/home/surveillance/congenital-heart-defect-surveillance/

  Congenital Heart Defects Surveillance Across Time And Regions (CHD STAR) is a CDC-funded surveillance program that is currently active in 7 states (Arizona, Georgia, Iowa, New York, North Carolina, South Carolina, and Utah). The goals of CHD STAR are to examine survival, healthcare utilization, co-occurring conditions, and other outcomes over time. Improved understanding of the public health significance of CHDs can lead to improved strategies to decrease mortality and improve the health of people affected by CHDs. […] On behalf of CHD STAR, IRCID conducts population-based surveillance of children, adolescents, and adults with congenital heart defects. Most current efforts to conduct population-based surveillance have focused on newborns, and limited population information is available on CHDs past early childhood. CHD STAR strives to better understand experiences and health outcomes related to health equity and identify opportunities to improve the health of people with CHDs.

• #61 Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7306355/

  We found the mortality of CHD experienced a significant decline between 1990 and 2017 at the global level, regardless of sex, age, and SDI region. However, the mortality was substantially heterogeneous across the world, primarily due to the disequilibrium in economics and medical facilities. […] This inequality suggested that more attention and priority should be placed on these less developed regions to alleviate the burden of CHD worldwide. Additionally, more than 80% of CHD related deaths occurred in children aged under 5 years, which emphasized the importance of prevention and early screening for CHD again.

• #62 Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7306355/

  We found the mortality of CHD experienced a significant decline between 1990 and 2017 at the global level, regardless of sex, age, and SDI region. However, the mortality was substantially heterogeneous across the world, primarily due to the disequilibrium in economics and medical facilities. […] This inequality suggested that more attention and priority should be placed on these less developed regions to alleviate the burden of CHD worldwide. Additionally, more than 80% of CHD related deaths occurred in children aged under 5 years, which emphasized the importance of prevention and early screening for CHD again.

• #63 WHO EMRO | Congenital heart disease in Saudi Arabia: current epidemiology and future projections | Volume 12, supplement 2 | EMHJ volume 12, 2006

  https://www.emro.who.int/emhj-volume-12-2006/volume-12-supplement-2/congenital-heart-disease-in-saudi-arabia-current-epidemiology-and-future-projections.html

  Future projections, thought to be critical for the comprehensive and optimum care of congenital heart disease population in Saudi Arabia, are also discussed. These are also considered of pivotal importance for groups which care for patients with congenital heart disease as well as for policymakers. […] The findings of epidemiological studies conducted in 4 different regions of Saudi Arabia were examined. […] A total of 2604 patients, 1299 males and 1305 females, age range 0-13 years, were evaluated in the studies. […] The cumulative detection rate at 1 year of age for all lesions was 59%. […] The impressive network of health institutions in Saudi Arabia should be exploited to give a better future for children with congenital heart disease. […] The availability of paediatric cardiac services in 3 centres within the same region (Riyadh) and an almost complete absence of cardiac centres which investigate congenital heart disease in other regions is a major deficiency which deserves urgent attention from policy makers in Saudi Arabia.

• #64

  https://www.indianpediatrics.net/dec2018/dec-1075-1082.htm

  Considering a birth prevalence of congenital heart disease as 9/1000, the estimated number of children born with congenital heart disease in India is more than 200,000 per year. Of these, about one-fifth are likely to have serious defect, requiring an intervention in the first year of life. Currently advanced cardiac care is available to only a minority of such children. […] The birth prevalence of severe CHD has been consistently reported as 1.5 – 1.7/1000 live births. […] The true incidence or birth prevalence has been reported only in few studies from India, which also include only babies born in the hospital. […] The birth prevalence of CHD in these studies was higher in comparison to data available from other countries. […] The currently available care for these children is grossly inadequate. […] There are over 60 centers that cater to children with congenital heart disease; majority are in southern states of India. […] Improving care of children with congenital heart disease is an uphill task, but needs to be addressed.

• #65

  https://www.indianpediatrics.net/dec2018/dec-1075-1082.htm

  Considering a birth prevalence of congenital heart disease as 9/1000, the estimated number of children born with congenital heart disease in India is more than 200,000 per year. Of these, about one-fifth are likely to have serious defect, requiring an intervention in the first year of life. Currently advanced cardiac care is available to only a minority of such children. […] The birth prevalence of severe CHD has been consistently reported as 1.5 – 1.7/1000 live births. […] The true incidence or birth prevalence has been reported only in few studies from India, which also include only babies born in the hospital. […] The birth prevalence of CHD in these studies was higher in comparison to data available from other countries. […] The currently available care for these children is grossly inadequate. […] There are over 60 centers that cater to children with congenital heart disease; majority are in southern states of India. […] Improving care of children with congenital heart disease is an uphill task, but needs to be addressed.

• #66 Data and Statistics | Congenital Heart Defects (CHDs) | CDC

  https://www.cdc.gov/heart-defects/data/index.html

  Heart defects are common. Every 15 minutes a baby is born with a heart defect in the U.S. Heart defects are common. Heart defects affect nearly 1% of about 40,000 births per year in the United States. The prevalence of some heart defects, especially mild types, is increasing. The prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect. About 1 in 4 babies with a heart defect have a critical heart defect. Infants with critical heart defects generally need surgery or other procedures in their first year of life. The prevalence of all types of heart defects, including critical heart defects, varies by state and by type of defect. Heart defects are a leading cause of birth defect-associated infant illness and death. During 1999-2017, about 1 in every 814 deaths were attributable to heart defects in the United States. Nearly half (48%) of the deaths due to heart defects occurred during infancy (younger than 1 year of age). The complexity of their defect, presence of other birth defects and birthweight might impact their survival to young adulthood. In addition, CDC researchers found that a mother’s race and ethnicity might have contributed to survival. Therefore, factors such as access to care, systemic racism, and implicit bias may contribute to survival to young adulthood.

• #67 Surveillance program for patients with congenital heart disease a success – CHOC Pediatrica

  https://care.choc.org/surveillance-program-for-patients-with-congenital-heart-disease-a-success/

  Surveillance program for patients with congenital heart disease a success […] A standardized surveillance program for children with congenital heart disease (CHD) as they grow to adulthood is proving to be very successful, according to a study that illustrates CHOC’s evolving reputation as a leader in cardiac neurodevelopmental services — nationally and abroad. […] Launched in July 2022, the program monitors children born with serious heart defects who, as they develop, have a high risk of experiencing developmental delays, cognitive impairments, learning disorders, ADHD, autism, and mental health difficulties, and ensures these children are referred to the CHOC Heart Institute’s Cardiac Neurodevelopmental Clinic (CNC). […] Monitoring newborns with complex CHD as they transition to adolescence and adulthood has become increasingly important because such patients are living longer due to advances over the last decades in surgical techniques and medical therapies. […] CHD affects 40,000 newborns each year, making it one of the most common developmental abnormalities. Over 90 percent of children with CHD are expected to survive into adulthood. […] Results of the CHD surveillance program have demonstrated a significantly high proportion of completed referrals for patients identifying as Hispanic/Latino within the overall distribution of patients, Dr. Tan said. […] Implementation of a standardized surveillance program with appropriately translated materials, attention to health literacy, and collaboration with parents in the referral process was especially critical for patients from historically marginalized groups, he added. […] More studies on the efficacy of the surveillance program and the neurodevelopmental outcomes found as a result will be forthcoming as additional data comes in, Dr. Tan noted. […] To date, more than 200 patients are participating in the surveillance program, he said. […] We hope our surveillance program can be a model for programs across the country of how we can find innovative ways to improve our education about cardiac neurodevelopment for these families and help connect them to all the services and supports their children need.

• #68 Surveillance program for patients with congenital heart disease a success – CHOC Pediatrica

  https://care.choc.org/surveillance-program-for-patients-with-congenital-heart-disease-a-success/

  Surveillance program for patients with congenital heart disease a success […] A standardized surveillance program for children with congenital heart disease (CHD) as they grow to adulthood is proving to be very successful, according to a study that illustrates CHOC’s evolving reputation as a leader in cardiac neurodevelopmental services — nationally and abroad. […] Launched in July 2022, the program monitors children born with serious heart defects who, as they develop, have a high risk of experiencing developmental delays, cognitive impairments, learning disorders, ADHD, autism, and mental health difficulties, and ensures these children are referred to the CHOC Heart Institute’s Cardiac Neurodevelopmental Clinic (CNC). […] Monitoring newborns with complex CHD as they transition to adolescence and adulthood has become increasingly important because such patients are living longer due to advances over the last decades in surgical techniques and medical therapies. […] CHD affects 40,000 newborns each year, making it one of the most common developmental abnormalities. Over 90 percent of children with CHD are expected to survive into adulthood. […] Results of the CHD surveillance program have demonstrated a significantly high proportion of completed referrals for patients identifying as Hispanic/Latino within the overall distribution of patients, Dr. Tan said. […] Implementation of a standardized surveillance program with appropriately translated materials, attention to health literacy, and collaboration with parents in the referral process was especially critical for patients from historically marginalized groups, he added. […] More studies on the efficacy of the surveillance program and the neurodevelopmental outcomes found as a result will be forthcoming as additional data comes in, Dr. Tan noted. […] To date, more than 200 patients are participating in the surveillance program, he said. […] We hope our surveillance program can be a model for programs across the country of how we can find innovative ways to improve our education about cardiac neurodevelopment for these families and help connect them to all the services and supports their children need.

• #69 Congenital Heart Defects

  https://www.health.ny.gov/diseases/birth_defects/chd.htm

  Congenital Heart Defects (CHDs) are the most common birth defects, occurring in about 1 in 110 births. […] Nearly 40,000 infants are born with CHDs each year in the United States. CHDs affect the structure and function of the heart, including how blood flows through the heart and out to the rest of the body. Common examples include holes in different areas of the heart and narrow or leaky valves. […] Of the 2.4 million people in the U.S. living with a CHD, more than half are adults, and that number is expected to rise 5% every year. However, adults with CHDs have 3 4 times higher rates of Emergency Room visits, hospitalizations, and Intensive Care Unit stays than the general population. […] CHDs are the most common birth defects that cause infant death. While most causes of CHDs are unknown, there may be prevention activities that prospective mothers (and fathers) can do to help increase the chance of having a baby with a healthy heart.

• #70 Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7306355/

  Understanding the epidemiology of CHD incidence along with mortality is of great interest for epidemiologists and policymakers and of great importance for knowing the disease burden of CHD. […] We found that the CHD incidence remained stable in both males and females from 1990 through 2017 at the global level. This result might suggest that there is little improvement in CHD prevention over the last 3 decades and highlighted the importance of etiological studies. […] Although the underlying causes of CHD are still obscure, most cases of CHD are multifactorial and caused by both genetic and environmental factors. […] CHD is the leading cause of infant death due to congenital defects. Several studies have shown a dramatic reduction in mortality and morbidity over the past century due to improvements in surgery, anesthesia and pediatric care.

• #71 Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7306355/

  Understanding the epidemiology of CHD incidence along with mortality is of great interest for epidemiologists and policymakers and of great importance for knowing the disease burden of CHD. […] We found that the CHD incidence remained stable in both males and females from 1990 through 2017 at the global level. This result might suggest that there is little improvement in CHD prevention over the last 3 decades and highlighted the importance of etiological studies. […] Although the underlying causes of CHD are still obscure, most cases of CHD are multifactorial and caused by both genetic and environmental factors. […] CHD is the leading cause of infant death due to congenital defects. Several studies have shown a dramatic reduction in mortality and morbidity over the past century due to improvements in surgery, anesthesia and pediatric care.

• #72 Epidemiology and Genetic Basis of Congenital Heart Disease | Obgyn Key

  https://obgynkey.com/epidemiology-and-genetic-basis-of-congenital-heart-disease/

  Congenital heart disease occurs in approximately 0.8% of live births. The incidence is higher in stillborns (3-4%), spontaneous abortuses (10-25%), and premature infants (about 2% excluding patent ductus arteriosus [PDA]). […] Despite these advances, congenital heart disease remains the leading cause of death in children with congenital malformations. […] The cause of most congenital heart defects is unknown. Most cases of congenital heart disease were thought to be multifactorial and result from a combination of genetic predisposition and environmental stimulus. […] A growing list of congenital heart lesions has been associated with specific chromosomal abnormalities, and several have even been linked to specific gene defects. […] A well-characterized genetic cause of congenital heart disease is the deletion of a large region (1.5-3 Mb) of chromosome 22q11.2, known as the DiGeorge critical region.

• #73 Epidemiology and Genetic Basis of Congenital Heart Disease | Obgyn Key

  https://obgynkey.com/epidemiology-and-genetic-basis-of-congenital-heart-disease/

  Congenital heart disease occurs in approximately 0.8% of live births. The incidence is higher in stillborns (3-4%), spontaneous abortuses (10-25%), and premature infants (about 2% excluding patent ductus arteriosus [PDA]). […] Despite these advances, congenital heart disease remains the leading cause of death in children with congenital malformations. […] The cause of most congenital heart defects is unknown. Most cases of congenital heart disease were thought to be multifactorial and result from a combination of genetic predisposition and environmental stimulus. […] A growing list of congenital heart lesions has been associated with specific chromosomal abnormalities, and several have even been linked to specific gene defects. […] A well-characterized genetic cause of congenital heart disease is the deletion of a large region (1.5-3 Mb) of chromosome 22q11.2, known as the DiGeorge critical region.

• #74 Epidemiology and Genetic Basis of Congenital Heart Disease | Obgyn Key

  https://obgynkey.com/epidemiology-and-genetic-basis-of-congenital-heart-disease/

  Other structural heart lesions that have been associated with specific chromosomal abnormalities include familial secundum atrial septal defect associated with heart block (the transcription factor NKX2.5 on chromosome 5q35), familial atrial septal defect without heart block (the transcription factor GATA4), Alagille syndrome (Jagged1 on chromosome 20p12), and Williams syndrome (elastin on chromosome 7q11).

• #75 Congenital heart disease in Saudi Arabia: current epidemiology and future projections

  https://iris.who.int/handle/10665/117204

  To provide an overview of the epidemiology of congenital heart disease, the results of epidemiological studies done in 4 regions of Saudi Arabia and 2604 individuals with congenital heart disease were evaluated. Ventricular septal defect was the commonest lesion followed by atrial septal defect. Overall, sex distribution was similar; for 3 conditions, more males than females were affected. Of 2269 presenting in the first year of life, 566 had neonatal congenital heart disease. Down syndrome was the commonest cause. Distribution of specific lesions and sex distribution was similar to findings from other parts of the world; however, the overall detection rate at 1 year of age was lower.

• #76 Epidemiologic Study of Congenital Heart Diseases and Its Related Factors in Children Referred to the Pediatric Cardiac Clinic of Birjand University of Medical Sciences, Iran

  https://jpp.mums.ac.ir/article_13759.html

  Congenital heart disease is the most common type of maternal abnormality and is the leading cause of mortality in the first year of life. The aim of this study was to determine the epidemiological and related factors of congenital heart disease (CHD) in children referred to the pediatric heart clinic of Vali-e-Asr Hospital of Birjand, Iran. […] In this descriptive-analytical cross-sectional study, the study population included 300 patients with congenital heart disease who referred to the Vali-e-Asr Hospital, Birjand, Iran. […] The mean age of children with CHD at the time of diagnosis was 1.25 2.92 years. 156 (52%) were male. The most common type of CHD included ventricular septal defect (28.7%), patent ductus arteriosus (18.2%), and atrial septal defect (14.6%). […] There was a significant statistical difference between drug use in pregnancy, maternal age, age of patients, mother’s education level, place of residency, and familial relationship of parents and CHD in the children p0.05.

• #77

  https://journals.lww.com/10.1097/01.ede.0000340255.91640.82

  To test the hypothesis that maternal exposure to air pollution is a risk factor for congenital heart disease (CHD). […] A total of 2728 CHDs were notified to NorCAS for the period of study across the study region. There was an increased risk of congenital malformations of cardiac septa (CS) in association with exposure to CO (OR = 2.28, 95% confidence interval (CI): 1.71,3.05) and NO (OR = 1.01, 95% CI: 1.01,1.02). Ventricular septal defect (VSD) was associated with exposure to CO (OR = 2.59, 95% CI = 1.83, 3.66) and NO (OR = 1.01, 95% CI = 1.01, 1.02). Tetralogy of Fallot (ToF) was associated with NO (OR = 1.02, 95% CI = 1.01, 1.04) and congenital pulmonary valve stenosis (PS) was associated with CO (OR = 2.50, 95% CI = 1.19, 5.23). For these associations, ORs were statistically significant (P-value 0.05) for all quintiles of exposure and there was an increasing trend in ORs from the first to the fourth quintiles.

• #78

  https://journals.lww.com/10.1097/01.ede.0000340255.91640.82

  No consistent association was found between maternal exposure to PM10 and O3 and CHD in the offspring. CO was found to be associated with VSD, PS and CS which is consistent with the findings for VSD reported in the United States. Consistent associations across quartiles of exposure were found for NO and VSD, ToF and CS. NO was not included in previous studies.

• #79 Congenital heart disease epidemiology and risk factors – Grants Awarded | Wellcome

  https://wellcome.org/research-funding/funding-portfolio/funded-grants/congenital-heart-disease-epidemiology-and-risk

  Congenital heart disease is one the most important causes of infant mortality and morbidity worldwide. […] Improved understanding of the role of maternal health in the development of offspring congenital heart diseases could inform the future development of prevention measures and limit the number of children affected by these lifelong conditions.

• #80 Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7306355/

  Understanding the epidemiology of CHD incidence along with mortality is of great interest for epidemiologists and policymakers and of great importance for knowing the disease burden of CHD. […] We found that the CHD incidence remained stable in both males and females from 1990 through 2017 at the global level. This result might suggest that there is little improvement in CHD prevention over the last 3 decades and highlighted the importance of etiological studies. […] Although the underlying causes of CHD are still obscure, most cases of CHD are multifactorial and caused by both genetic and environmental factors. […] CHD is the leading cause of infant death due to congenital defects. Several studies have shown a dramatic reduction in mortality and morbidity over the past century due to improvements in surgery, anesthesia and pediatric care.

• #81 Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017

  https://pmc.ncbi.nlm.nih.gov/articles/PMC7306355/

  Congenital heart disease (CHD) is the most commonly diagnosed congenital disorder in newborns. The incidence and mortality of CHD vary worldwide. A detailed understanding of the global, regional, and national distribution of CHD is critical for CHD prevention. […] The incidence of CHD was relatively high in developing countries located in Africa and Asia, while low in most developed countries. Between 1990 and 2017, the CHD incidence rate remained stable at the global level, whereas increased in certain developed countries, such as Germany and France. The age-standardized mortality rate of CHD declined substantially over the last 3 decades, regardless of sex, age, and SDI region. The decline was more prominent in developed countries. […] The incidence of CHD remained stable over the last 3 decades, suggesting little improvement in CHD prevention strategies and highlighting the importance of etiological studies. The mortality of CHD decreased worldwide, albeit the greatly geographical heterogeneity. Developing countries located in Africa and Asia deserve more attention and priority in the global CHD prevention program.

• #82 Changing epidemiology of congenital heart disease: effect on outcomes and quality of care in adults | Nature Reviews Cardiology

  https://www.nature.com/articles/s41569-022-00749-y

  Lifespan disease trajectories for CHD populations with a high disease burden measured over prolonged time windows are becoming increasingly important to define long-term outcomes that can be improved. […] The study provides a systematic analysis of the global prevalence of CHD in 1990 and 2017. […] The study demonstrated the effect of specialized adult CHD care in reducing mortality.

• #83 Epidemiology and Genetics of Congenital Heart Di – 9780443313905 | Elsevier Health

  https://www.uk.elsevierhealth.com/epidemiology-and-genetics-of-congenital-heart-disease-an-issue-of-clinics-in-perinatology-9780443313905.html

  In this issue of Clinics in Perinatology, guest editors Drs. Asaad Beshish and Holly Bauser-Heaton bring their considerable expertise to the topic of Epidemiology and Genetics of Congenital Heart Disease. Adult survivors of CHD commonly experience cardiac and non-cardiac comorbidities which affect quality of life and prognosis. Genetic etiologies of CHD have important clinical implications for genetic counseling of patients and families and can affect clinical outcomes by identifying at-risk patients. This issue highlights the epidemiology and genetic components of heart defects with an eye on future outcomes and quality of life. […] In this issue of Clinics in Perinatology, guest editors Drs. Asaad Beshish and Holly Bauser-Heaton bring their considerable expertise to the topic of Epidemiology and Genetics of Congenital Heart Disease. Adult survivors of CHD commonly experience cardiac and non-cardiac comorbidities which affect quality of life and prognosis. Genetic etiologies of CHD have important clinical implications for genetic counseling of patients and families and can affect clinical outcomes by identifying at-risk patients. This issue highlights the epidemiology and genetic components of heart defects with an eye on future outcomes and quality of life.

• #84 Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia – Neidenbach – Cardiovascular Dia

  https://cdt.amegroups.org/article/view/22846/html

  Today most patients with congenital heart defects (CHD) survive into adulthood. […] The reported incidence or birth prevalence of CHD largely depends on the study design and the lack of birth registries in many countries, ranging from five to eight per 1,000 live births before the introduction of echocardiography, and from eight to 12 per 1,000 thereafter. […] Although mortality of CHD has decreased considerably, morbidity remains substantial which is widely underestimated. […] Of note, medical care in specialized centers is able to significantly reduce mortality in children and adults with CHD. […] As many CHD-related problems manifest differently from acquired heart disease, established treatment regimens for acquired heart disease can only be applied to a limited extent to CHD. […] In summary, assessment and treatment of heart failure in CHD is challenging and requires special expertise as recommendations for acquired heart disease cannot be applied uncritically. […] In the field of CHD primary and secondary medical prevention will henceforth become increasingly important in order to reduce the burden of disease as well as the socioeconomic burden and costs.

• #85 Improving medical care and prevention in adults with congenital heart disease—reflections on a global problem—part I: development of congenital cardiology, epidemiology, clinical aspects, heart failure, cardiac arrhythmia – Neidenbach – Cardiovascular Dia

  https://cdt.amegroups.org/article/view/22846/html

  Today most patients with congenital heart defects (CHD) survive into adulthood. […] The reported incidence or birth prevalence of CHD largely depends on the study design and the lack of birth registries in many countries, ranging from five to eight per 1,000 live births before the introduction of echocardiography, and from eight to 12 per 1,000 thereafter. […] Although mortality of CHD has decreased considerably, morbidity remains substantial which is widely underestimated. […] Of note, medical care in specialized centers is able to significantly reduce mortality in children and adults with CHD. […] As many CHD-related problems manifest differently from acquired heart disease, established treatment regimens for acquired heart disease can only be applied to a limited extent to CHD. […] In summary, assessment and treatment of heart failure in CHD is challenging and requires special expertise as recommendations for acquired heart disease cannot be applied uncritically. […] In the field of CHD primary and secondary medical prevention will henceforth become increasingly important in order to reduce the burden of disease as well as the socioeconomic burden and costs.

• #86 42 U.S. Code § 280g-13 – National congenital heart disease research, surveillance, and awareness | U.S. Code | US Law | LII / Legal Information Institute

  https://www.law.cornell.edu/uscode/text/42/280g-13

  Not later than 2 years after November 21, 2024, the Secretary shall issue a report to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate including the following: (A) A description of past and present activities of the Department of Health and Human Services to increase awareness and knowledge of the public with respect to congenital heart disease, including efforts to address the lifelong needs of congenital heart disease patients. […] The Secretary shall develop and submit to Congress a strategy for improving efforts to increase awareness and knowledge of the public and education and training of health care providers with respect to congenital heart disease. Such strategy shall include findings and recommendations to (i) address any public awareness and research gaps and opportunities related to the lifelong needs of congenital heart disease patients, including long-term health outcomes, quality of life, mental health, and health care utilization.

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