Materiały źródłowe

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

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

  Heart defects are the most common types of birth defects. […] 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. […] About 1 in 4 babies with a heart defect have a critical heart defect. […] 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. […] Survival of infants with heart defects depends on severity of the defect, timing of diagnosis, treatments, and presence of other conditions. […] Survival and medical care for babies with critical heart defects are improving.

• #1 Congenital heart defect rates may be much higher than once thought | American Heart Association

  https://www.heart.org/en/news/2024/08/26/congenital-heart-defect-rates-may-be-much-higher-than-once-thought

  Congenital heart defects are the most common birth defect in the U.S., with previous estimates placing the number at about 40,000 babies each year, or 1% of all births nationally. […] A broad new analysis of Colorado insurance data suggests national estimates may be severely undercounting children born with heart defects, and at least half of them have other genetic disorders and chronic conditions. […] Researchers say the much-needed data can be used to better plan for the treatment of children who may need lifelong care. […] Measuring how many children are affected by heart defects has been challenging. […] In the new study, researchers analyzed all-payer claims data from 2012 to 2019 for children in Colorado who were 18 or younger on Jan. 1, 2012. […] From more than 1.5 million children in the Colorado database, Parker and her team identified 30,512 who were diagnosed with heart defects – nearly 2%.

• #1 Congenital Heart Defects in the United States: Estimating the Magnitude of the Affected Population in 2010

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4942347/

  Because of advancements in care, there has been a decline in mortality from congenital heart defects (CHD) over the last several decades. […] Our aim was to estimate the CHD prevalence across all age groups in the US in the year 2010. […] We estimated that approximately 2.4 million people (1.4 million adults, 1 million children) were living with CHD in the US in 2010. Nearly 300,000 of these individuals had severe CHD. […] Our estimates highlight the need for two important efforts: (1) planning for health services delivery to meet the needs of the growing population of adults with CHD and; (2) the development of surveillance data across the lifespan to provide empirical estimates of the prevalence of CHD across all age groups in the US. […] Congenital heart defects (CHD) are diagnosed in approximately 810 per 1,000 live births in the United States (US).

• #1 Congenital Heart Defects in the United States: Estimating the Magnitude of the Affected Population in 2010

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4942347/

  Advances in medical and surgical treatment have led to decreased mortality attributable to CHD across all age groups in the US. […] The most compelling evidence of this demographic shift comes from recent analyses of administrative data in Qubec. […] Evidence-based planning for health services delivery to meet the needs of the growing population of adults with CHD in the US will depend on the availability of contemporary data on prevalence of CHD across the lifespan. […] The goal of the current study was to provide estimates of the prevalence of CHD across all age groups in the US in the year 2010. […] Approximately 2.4 million people were estimated to be alive with CHD in the US in 2010. […] The prevalence of CHD ranged from approximately 6 per 1,000 in adults to 13 per 1,000 in children although there are more adults estimated to be living with CHD (approximately 1.4 million) compared to children (approximately 1 million). […] The current estimates for the year 2010 represent a 40% increase in the total number of individuals living with CHD in the US and over a 60% increase in the size of the adult population alone.

• #1 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.

• #1 Prevalence of congenital heart defects in internationally adopted children | Anales de Pediatría

  https://www.analesdepediatria.org/en-prevalence-congenital-heart-defects-in-articulo-S234128792100140X

  Congenital heart defects (CHDs) are the most frequently diagnosed congenital anomalies in children in Europe. The spectrum of disease ranges from complex malformations associated with a high mortality to benign septal defects. Based on data from the European Surveillance of Congenital Anomalies (EUROCAT) network, the prevalence of CHDs in the absence of genetic abnormalities in Europe in the 2000-2018 period was of 0.58% of all live births. […] The literature on international adoption shows that congenital anomalies are overrepresented in the population of internationally adopted (IA) children, with differences in prevalence based on the country of origin. […] The prevalence of CHDs in the cohort of IA children was 4.55%, 7.8 times higher compared to the prevalence reported by the EUROCAT.

• #1

  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. […] A large pool of older infants and children who may have survived despite no intervention add to the burden of CHD. […] Of the 240,000 children born with CHD each year in India, about one fifth would need early intervention to survive the first year of life.

• #1 Epidemiology of Congenital Heart Defects in India – Blog

  https://www.genesis-foundation.net/blog/epidemiology-of-congenital-heart-defects-in-india/

  9 in every 1000 kids. More than 200,000 kids per year. Over 70,000 with serious defects. The data above is the prevalence of Congenital heart defects in children in India every year. Owing to marked regional variation in population and birth rates, the total number of babies born with Congenital Heart Defects (CHD) are much higher in the Northern and Eastern parts of India: i.e. Delhi, Jammu and Kashmir, Punjab, Haryana, Himachal Pradesh, Rajasthan, Uttar Pradesh, Uttarakhand, Bihar, Jharkhand, Orissa and West Bengal compared to the Southern, Western, Central and North-Eastern regions. […] Based on the information provided by 47 centers in India, there is a clear paradox: Most cardiac care centers are located in regions with lower burden of CHD. A child born in the Southern and Western states of India has a much greater chance of receiving adequate care treatment than in states such as Uttar Pradesh, Bihar, Jharkhand and Madhya Pradesh, which have a much higher CHD burden. In contrast, babies born in Eastern, Central and North Eastern parts of India have a much lower chance of receiving an intervention.

• #1 Congenital heart disease epidemiology and demographics – wikidoc

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

  Congenital heart disease is the most common birth defect, affecting one in every 125 live births. More children die each year from congenital heart disease than from all forms of pediatric cancers combined. […] Affects approximately one in every 125 babies born. […] In the US, 40,000 people each year are born with congenital heart disease. […] In the US, 4,000 out of the 40,000 do not survive past infancy and into the second year of life. […] In the US, twice as many children die each year from congenital heart disease than from all forms of pediatric cancers combined. […] Ventricular septal defect (VSD) accounts for one-third of all congenital heart disease, making it the most common congenital heart defect. […] Approximately 1 million adults in united states are estimated to have Congenital heart defect. […] Growth of population with congenital heart defect is 5%. […] The number of adults with problems connected to a congenital heart defect is rising, passing the number of children with congenital heart defects in most Western countries.

• #1

  https://www.ijpediatrics.com/index.php/ijcp/article/view/5779

  Congenital heart diseases are a major cause of mortality and morbidity in children. The aim of the study was to know the spectrum of congenital heart diseases in a tertiary care centre. 150 patients aged below 5 years presenting with signs and symptoms suggestive of CHD were evaluated in this study. 91 were found to have congenital heart disease. We found VSD in 31.87%, ASD in 29.98%, PDA in 9.9% TOF in 5.49% and complex heart diseases in 16.48% cases. The majority of these patients were seen in the age group 1 to 12 months of age. […] Ventricular septal defect 31.87% was the commonest heart disease, followed by ASD 29.98%.

• #1 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/

  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. […] Epidemiological studies have shown varied frequency and prevalence of congenital heart diseases. […] Ventricular septal defect, with an incidence of 30.5%, was the most common defect in our study, similarly to the results of other studies. […] In conclusion, congenital heart defects are mainly referred for treatment during infancy and the neonatal period, ventricular septal defect being the most frequent anomaly.

• #1 Clinical Spectrum of congenital heart defects (CHD) detected at the child health Clinic in a Tertiary Health Facility in Ghana: a retrospective analysis | Journal of Congenital Cardiology | Full Text

  https://jcongenitalcardiology.biomedcentral.com/articles/10.1186/s40949-020-00034-y

  This study demonstrates the value of an accurate EHR, especially as we lost almost a third of the data due to incomplete entries. […] The commonest CHD diagnosed at the facility were ventricular septal defects (31.4%) and PDA (5.88%) which is similar to reported cases in other low resource countries. […] During the period under consideration, 4 (5.06%) children died from CHD related complications and late interventions. […] Pulse oximetry (PO) measurements have been recommended as a routine screening method for newborns to be able to detect cyanotic CHD lesions early and take appropriate interventions. […] Our study shows that the average age at diagnosis for infants (less than 1 year of age) was 4months, which allows for sufficient time to intervene surgically. […] This study will also facilitate a registry for CHD with the goal of increased monitoring and better management.

• #1 Overview of Congenital Cardiovascular Anomalies – Pediatrics – Merck Manual Professional Edition

  https://www.merckmanuals.com/professional/pediatrics/congenital-cardiovascular-anomalies/overview-of-congenital-cardiovascular-anomalies

  Congenital heart disease is the most common congenital anomaly, occurring in almost 1% of live births. Among birth defects, congenital heart disease is the leading cause of infant mortality. […] The most common congenital heart diseases diagnosed in infancy are muscular and perimembranous ventricular septal defects followed by secundum atrial septal defects, with a total prevalence of 48.4 in 10,000 live births. […] Overall, bicuspid aortic valves are the most common congenital defects with a prevalence reported to be as high as 0.5% to 2.0%. […] Certain numerical chromosomal abnormalities (aneuploidies), such as trisomy 21 (Down syndrome), trisomy 18, trisomy 13, and monosomy X (Turner syndrome), are strongly associated with congenital heart disease. […] No identifiable genetic etiology is detected in about 72% of patients with congenital heart disease.

• #1 Epidemiology of Congenital Heart Disease | Obgyn Key

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

  The prevalence of CHD is the ratio of the number of cases to the number of births in a defined population. Estimating the prevalence accurately requires precise diagnostic criteria for the identification of cases and complete ascertainment of all cases. […] The prevalence of CHD among autopsied stillborn infants is 76.9 in 1,000, which is nearly ten times higher than the rate found in liveborn infants. […] The frequency of occurrence of various types of CHD among liveborn infants is shown in Table 52.3. […] Noncardiac congenital anomalies are frequently seen in infants with CHD. Data from the Baltimore-Washington Infant Study indicate that 27.7% of patients with CHD had associated noncardiac defects. […] Because 50% of infants with Down syndrome have CHD, all infants with trisomy 21 should have complete cardiac evaluations in the first month of life.

• #1 Overview of Congenital Cardiovascular Anomalies – Pediatrics – Merck Manual Professional Edition

  https://www.merckmanuals.com/professional/pediatrics/congenital-cardiovascular-anomalies/overview-of-congenital-cardiovascular-anomalies

  The recurrence risk of congenital heart disease in a family depends on the cause. Risk is negligible in de novo mutations, 2 to 5% in nonsyndromic multifactorial congenital heart disease, and 50% when an autosomal dominant mutation is the cause. […] It is important to identify genetic factors because more patients with congenital heart disease are surviving into adulthood and potentially starting families. […] Manifestations of congenital heart diseases are varied but commonly include murmurs, cyanosis, heart failure, and diminished or nonpalpable pulses. […] Screening for critical congenital heart disease using pulse oximetry is recommended for all neonates before hospital discharge. […] All neonates with a positive screening result should undergo a comprehensive evaluation for congenital heart disease and other causes of hypoxemia. […] Treatment of heart failure varies widely depending on the etiology. Definitive therapy typically requires correction of the underlying problem.

• #1 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. A babys risk of having a CHD is increased by 3 times if the mother, father, or sibling has a CHD.

• #1 Congenital heart disease linked to neighborhood pollution, poverty | American Heart Association

  https://www.heart.org/en/news/2019/11/13/congenital-heart-disease-linked-to-neighborhood-pollution-poverty

  Infants are more likely to be born with serious heart defects if their homes are in neighborhoods that are polluted or economically deprived, a new study finds. […] Congenital heart defects – abnormalities in the heart or nearby blood vessels that arise before birth – affect an estimated 1.3 million Americans. At least 8 in every 1,000 babies have some form of congenital heart problem, most of which are mild. […] In the study, infants from neighborhoods classified as both the most socially and economically deprived and most polluted were 48% more likely than babies from the least deprived, least polluted areas to have a congenital heart defect. […] The research team, from California and Iowa, also found that in deprived neighborhoods, mothers’ health problems such as diabetes and hypertension helped account for newborns’ higher rates of heart defects.

• #1 Congenital heart disease linked to neighborhood pollution, poverty | American Heart Association

  https://www.heart.org/en/news/2019/11/13/congenital-heart-disease-linked-to-neighborhood-pollution-poverty

  „Basically, it’s not social deprivation itself that increases the risk of congenital heart defects, but other factors that occur as a result of social deprivation,” Peyvandi said. […] Among every 1,000 live births, 3.2 infants had a serious heart defect that required repair within their first year, the study found. […] Even in the least-polluted neighborhoods, reduced socioeconomic status increased the odds of a serious heart defect 12% to 26%, the study found. […] Congenital heart defects pose many ongoing medical challenges, said Dr. Anushree Agarwal, who specializes in care of adults who were born with heart defects. […] While medical advances have led to better treatments, the causes of congenital heart disease remain unclear, she said. „This is what makes this study so unique, because it helps us identify potential modifiable risk factors which, if can be addressed, could make a lasting impact on the field.”

• #1 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. […] Assessing health issues and needs across the lifespan can help ensure people born with heart defects are getting needed care. […] 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. […] By studying data from tracking programs, researchers can identify factors that increase or decrease the risk of heart defects. […] 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.

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

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

  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. […] 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.

• #1 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.

• #1 Advancing Surveillance of CongenitalHeart Defects – Regenstrief Institute

  https://www.regenstrief.org/projects/congenital-heart-defects-surveillance/

  To better understand the magnitude and burden of CHD in Indiana, this project uses population-based surveillance approaches to: (1) employ available methods for identification of CHD cases among children, adolescents, and adults living in Indiana; (2) integrate comprehensive clinical and administrative data on individuals with CHD; (3) utilize integrated data to measure outcomes for individuals with CHD; and (4) train a machine learning model to more accurately identify CHD cases. […] Under Component A, we will use multiple data sources, including the Indiana Birth Defects and Problems Registry (IBDPR), vital records, immunization registry records, and electronic health records (EHRs) to identify CHD cases and build an integrated database of relevant information for surveillance of prevalence and outcomes. […] Under Component B, we will train and refine a machine learning algorithm that accurately identifies CHD in the EHR, including cases of mild-to-moderate CHD, which are often omitted from surveillance.

• #1 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/

  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). […] 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.

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

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

  About 95% of babies born with a non-critical heart defect are expected to survive to at least 18 years of age. […] About 69% of babies born with a critical heart defect are expected to survive to at least 18 years of age. […] Overall, about 81% of babies born with heart defects are expected to survive to at least 35 years of age. […] Compared to children without a heart condition, children with a heart condition were more likely to have special healthcare needs. […] Nearly 60% of children with a heart condition have special healthcare needs, compared to 20% of children without a heart condition. […] Adults living with heart defects are more likely than the general population to report additional cardiovascular issues. […] Adults with heart defects are more likely to have a disability than adults without heart defects. […] In 2019, hospital costs for individuals living with heart defects in the United States exceeded $9.8 billion.

• #1 Survival outcomes for congenital heart disease from Southern Malaysia: results from a congenital heart disease registry | Archives of Disease in Childhood

  https://adc.bmj.com/content/109/5/363

  The mortality rate was 15%, with significantly lower rates from 2016 to 2020 compared with 2006 to 2015 (258/2148, 12% vs 578/3580, 16%; p0.001). […] The overall neonatal death rate was 2.6 %, ranging from 2.4% to 4.8%, and infant mortality was 11%, ranging from 8.9% to 13%. […] The highest mortality was observed in infants with hypoplastic left heart syndrome (HLHS) (92%), followed by heterotaxia (70%) and truncus arteriosus (60%). […] The estimated survival rate for CHD declines rapidly within the first few years of life, with estimated survival rates at 1, 5, 10 and 15 years are 88%, 85%, 84% and 83%, respectively. […] The independent factors associated with mortality were male gender, associated syndrome or extracardiac defect, pulmonary hypertension, antenatal diagnosis and severe lesions. […] This population-based study revealed that the overall outcome of CHD is good except for those with severe lesions, non-cardiac malformations or syndromes, and PHT.

• #1 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

  Survival analysis showed that in patients diagnosed with CHD before 1 year of age, risk of death was significantly associated with male sex (hazard ratio [HR] 1.17), multiple CHD types (HR 1.70), and no performed surgery (HR 0.57). In patients diagnosed with CHD after 1 year of age, risk factors were male sex (HR 1.65), multiple CHD types (HR 1.55), and no performed surgery (HR 1.82).

• #1 Congenital Heart Defects

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

  Many people with CHDs are not cured with one surgery and require specialized health care throughout their lives. People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.

• #1 Epidemiology of Congenital Heart Disease | Obgyn Key

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

  Epidemiology of Congenital Heart Disease David E. Fixler Congenital heart disease (CHD) is a leading cause of death during the first year of life. Malformations of the heart occur in about 8:1,000 liveborn infants, resulting in up to 36,000 cases/year in the United States. […] Children with CHD use between 25% and 30% of the beds in most pediatric intensive care units and therefore consume a large fraction of pediatric health care resources. […] Recent studies have shown that the children of women with CHD are at much greater risk of having cardiac malformations. In the next decade, the prevalence of CHD will increase as a result of longer survival and the greater incidence of heart defects in the children of survivors. Pediatric health care providers need to be informed of the prevalence of CHD, the familial risk of CHD recurrence, and risk factors for CHD.

• #1 Surveillance of Congenital Heart Defects Among Children Adolescents and…

  https://www.highergov.com/grant-opportunity/surveillance-of-congenital-heart-defects-among-children-adolescents-and-adults-350136/

  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.

• #1

  https://www.who.int/news-room/fact-sheets/detail/birth-defects

  An estimated 240 000 newborns die worldwide within 28 days of birth every year due to congenital disorders. Congenital disorders cause a further 170 000 deaths of children between the ages of 1 month and 5 years. […] The most common severe congenital disorders are heart defects, neural tube defects and Down syndrome. […] While complex genetic and environmental interactions are proposed, most congenital disorders have unknown causes, including congenital heart defects, cleft lip or palate and club foot. […] Surgery with good follow up care can often mitigate the potential lethality (as in the case of congenital heart defects) or the morbidity (e.g., congenital talipes, cleft lip/palate) associated with structural congenital disorders. […] Outcomes are improved with early detection at lower levels of the system through screening, referral and management (at specialist centres in case of some issues like cardiac defects). […] WHO agreed to promote primary prevention and improve the health of children with congenital disorders by developing and strengthening registration and surveillance systems.

• #1 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;

• #1 Addressing the Global Burden of Pediatric and Congenital Heart Diseases

  https://world-heart-federation.org/news/call-to-action-on-addressing-the-global-burden-of-pediatric-and-congenital-heart-diseases/

  On 27 August 2023, the global pediatric and adult congenital cardiac community will gather in Washington, D.C., at the 8th World Congress of Pediatric Cardiology and Cardiac Surgery. […] Of every 100 children born around the world, one will have a malformation of the heart, congenital heart disease (CHD). Nearly half of the children with CHD will need a medical intervention in their lifetime, and a quarter of them will need it in the first year of life in order to survive. […] Up to 90% of those born with CHD in LMICs do not have access to cardiac care, and they continue to suffer the high levels of death and disability HICs began to overcome more than fifty years ago. […] CHD is quickly becoming a leading cause of mortality in neonates and children in LMICs, and for those who survive, it can be a life-limiting condition if left untreated.

• #1 Addressing the Global Burden of Pediatric and Congenital Heart Diseases

  https://world-heart-federation.org/news/call-to-action-on-addressing-the-global-burden-of-pediatric-and-congenital-heart-diseases/

  Accelerating progress to address the burden of pediatric and congenital heart disease globally is in line with the 2030 Global Agenda for Sustainable Development (SDG3). […] We hereby call upon the global community in general, and every responsible government, for an effective policy response supported by adequate financial investment to address the needs of all with pediatric and congenital heart diseases. […] The timely diagnosis treatment and lifelong care of pediatric and congenital heart disease will be integrated into all health system strengthening and surgical scale up plans. […] Health professionals will be able to recognize the basic signs and symptoms of congenital and rheumatic heart disease. Accredited pediatric cardiac training programs will be available in all countries.

• #1 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. […] To investigate risk factors affecting mothers during pregnancy and how these contribute to the development of congenital heart defects in the offspring. […] 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.

• #2 Surveillance of Congenital Heart Defects Among Children Adolescents and…

  https://www.highergov.com/grant-opportunity/surveillance-of-congenital-heart-defects-among-children-adolescents-and-adults-350136/

  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.

• #2 Children’s Heart | About CHDs | Congenital Heart Defects

  https://www.childrensheartfoundation.org/about-chds/chd-facts.html

  Congenital heart defects (CHDs) are problems present at birth that affect the structure and function of the heart. Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place. CHDs are the most common cause of infant death due to birth defects. 25% of babies born with a complex CHD will not see their 1st birthday. […] Congenital heart defects are the most common birth defect in the United States. Nearly one of every 110 babies is born with a CHD. Each year approximately 40,000 babies are born in the United States with a congenital heart defect. This equates to 1 child every 15 minutes. […] Approximately two to three million individuals are thought to be living in the United States with CHDs. Because there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.

• #2 Population-Based Estimates of the Prevalence of Children With Congenital Heart Disease and Associated Comorbidities in the United States – PubMed

  https://pubmed.ncbi.nlm.nih.gov/39185543/

  Congenital heart defects (CHD) are the most common birth defects and previous estimates report the disease affects 1% of births annually in the United States. […] It is therefore important to derive high-quality, population-based estimates of the prevalence of CHD to help care for this vulnerable population. […] We identified 1 566 328 children receiving care in Colorado from 2012 to 2019. Of those, 30 512 children had at least 1 CHD diagnosis, comprising 1.95% (95% CI, 1.93-1.97) of the pediatric population. […] The current study is the first population-level analysis of pediatric CHD in the United States. Using administrative claims data, our study found a higher CHD prevalence and comorbidity burden compared with previous estimates.

• #2 Congenital Heart Defects in the United States: Estimating the Magnitude of the Affected Population in 2010

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4942347/

  Advances in medical and surgical treatment have led to decreased mortality attributable to CHD across all age groups in the US. […] The most compelling evidence of this demographic shift comes from recent analyses of administrative data in Qubec. […] Evidence-based planning for health services delivery to meet the needs of the growing population of adults with CHD in the US will depend on the availability of contemporary data on prevalence of CHD across the lifespan. […] The goal of the current study was to provide estimates of the prevalence of CHD across all age groups in the US in the year 2010. […] Approximately 2.4 million people were estimated to be alive with CHD in the US in 2010. […] The prevalence of CHD ranged from approximately 6 per 1,000 in adults to 13 per 1,000 in children although there are more adults estimated to be living with CHD (approximately 1.4 million) compared to children (approximately 1 million). […] The current estimates for the year 2010 represent a 40% increase in the total number of individuals living with CHD in the US and over a 60% increase in the size of the adult population alone.

• #2 Epidemiology of Congenital Heart Disease | Obgyn Key

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

  The prevalence of CHD is the ratio of the number of cases to the number of births in a defined population. Estimating the prevalence accurately requires precise diagnostic criteria for the identification of cases and complete ascertainment of all cases. […] The prevalence of CHD among autopsied stillborn infants is 76.9 in 1,000, which is nearly ten times higher than the rate found in liveborn infants. […] The frequency of occurrence of various types of CHD among liveborn infants is shown in Table 52.3. […] Noncardiac congenital anomalies are frequently seen in infants with CHD. Data from the Baltimore-Washington Infant Study indicate that 27.7% of patients with CHD had associated noncardiac defects. […] Because 50% of infants with Down syndrome have CHD, all infants with trisomy 21 should have complete cardiac evaluations in the first month of life.

• #2 Prevalence of congenital heart defects in internationally adopted children | Anales de Pediatría

  https://www.analesdepediatria.org/en-prevalence-congenital-heart-defects-in-articulo-S234128792100140X

  The most frequent CHDs were atrial septal defect (ASD, 40% of the total) and ventricular septal defect (VSD, 30% of the total). […] It is known that CHDs may result from cytogenetic abnormalities, monogenic variants, environmental factors or, most frequently, have a multifactorial aetiology. […] The most salient finding of our study was the high prevalence of CHDs in children adopted from Russia. […] Based on our findings, it is reasonable to hypothesise that PAE may play an important role as an environmental factor in the aetiology of the CHDs observed in children adopted from Russia.

• #2 About Congenital Heart Defects and Our Program

  https://sph.emory.edu/research/centers/congenital-heart-defect/index.html

  Congenital heart defects (CHDs) occur in approximately 1%, or 40,000 births per year in the United States. […] Survival in infants with CHD through adulthood has significantly increased over the past few decades due to screening programs that allow for early detection during and after pregnancy, as well as innovative surgical procedures that correct or modify structural defects. […] The Emory Adolescent and Adult Congenital Heart Defect (CHD) Program has been working collaboratively with the Centers for Disease Control and Prevention (CDC) and other institutions across the nation since 2012 to better understand the strengths and limitations of CHD surveillance in the U.S., describe characteristics and understand healthcare utilization of the adolescent and adult CHD population, and to inform actions to improve health outcomes and address inequities.

• #2 Children’s Heart | About CHDs | Congenital Heart Defects

  https://www.childrensheartfoundation.org/about-chds/chd-facts.html

  Today, 95% of babies born with a non-critical CHD are expected to survive to at least 18 years of age. Critical CHD Survival Rates: Today: 69% of babies born with a critical CHD are expected to survive to 18 years of age. […] Approximately 25% of children born with a CHD will need heart surgery or other interventions in their first year of life to survive. […] Because of advancements made through research, death rates from CHDs in the U.S. have declined by 37.5% since 1999. Today, more infants with CHDs survive to adulthood because of these advancements.

• #2 Congenital Heart Defects in the United States: Estimating the Magnitude of the Affected Population in 2010

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4942347/

  Because of advancements in care, there has been a decline in mortality from congenital heart defects (CHD) over the last several decades. […] Our aim was to estimate the CHD prevalence across all age groups in the US in the year 2010. […] We estimated that approximately 2.4 million people (1.4 million adults, 1 million children) were living with CHD in the US in 2010. Nearly 300,000 of these individuals had severe CHD. […] Our estimates highlight the need for two important efforts: (1) planning for health services delivery to meet the needs of the growing population of adults with CHD and; (2) the development of surveillance data across the lifespan to provide empirical estimates of the prevalence of CHD across all age groups in the US. […] Congenital heart defects (CHD) are diagnosed in approximately 810 per 1,000 live births in the United States (US).

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