CDC Grant: Enhancing Surveillance of Congenital Heart Defects

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2) Category B: Develop and implement innovative approaches for conducting population-based surveillance of CHDs in adolescents and adults, and if possible, across the lifespan, by linking existing data sources. Surveillance data will be used for descriptive epidemiology, to identify comorbidities, and examine healthcare utilization and referral to timely and appropriate services.

CHDs are one of the most prevalent birth defects in the United States affecting about one percent of all births and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs. However, most current efforts to conduct population-based surveillance of CHDs have focused on monitoring newborns, and little data exist on the prevalence and descriptive epidemiology of CHDs beyond early childhood in the United States. Improvements in treatment of CHDs and consequently in survival have resulted in many individuals, even those affected by a very severe CHD, living into adolescence and adulthood. Current estimates suggest there are over 2 million people living with a CHD in the United States, including over one million adults; about 12% of these affected adults have a severe CHD. Despite the public health burden, the lack of population-based surveillance for CHDs among individuals of all ages in the United States precludes reliable data on the actual prevalence, and the type and number of health services required to address the health needs of these individuals, costs of such health services, and longer term outcomes including comorbidities and survival of individuals living with CHDs. Given that many individuals with CHD are living into adolescence and adulthood, they will need to transition their care from pediatric to adult-centered care. In the absence of structured programs to guide this transition, there can be delayed or inappropriate care, improper timing of the transfer of care, and undue emotional and financial stress on the patients, their families, and the healthcare system. Without appropriate transition, patients may not stay in care and be lost to follow-up. There is a need for furthered understanding of transition of care issues and perceptions of need for specialty care.
The federal Patient Protection and Affordable Care Act (PL 111-148, Section 10411) authorized CDC to “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” for the purpose of facilitating “further research into the types of health services patients use and to identify possible areas for educational outreach and prevention.”
The FY12 budget states: “Congenital Heart Disease.- The conferees are concerned that there is a lack of rigorous epidemiological and longitudinal data on individuals of all ages with congenital heart disease and has included funding to begin to compile this information. The conferees are particularly interested in information on prevalence, barriers to effective care, survival outcomes and neurocognitive outcomes.” The FY14 Omnibus budget held agreement for language in Senate Report 113-71 expanding CHD work at CDC and states: “Congenital Heart Defects [CHD].—CHD continue to be the most common birth defect and leading cause of infant mortality in the United States. Even those who receive successful intervention will need lifelong, costly, specialized cardiac care. Estimates suggest there are over 2 million people alive today with CHDs. The Committee commends CDC for its increasing efforts to address the lifelong needs of this growing population, particularly in collaboration with other Federal agencies and private organizations. However, the Committee is concerned that there continues to be a lack of rigorous epidemiological and longitudinal data on individuals of all ages with CHD and includes funding to continue initial efforts to compile this information.” The report language also provided guidance “to collect and analyze nationally representative, population-based epidemiological and longitudinal data on infants, children, and adults, with the goal of improving estimates of CHD incidence, prevalence, and disease burden, which can be used to better assess the public health impact of this condition.”
In FY12, CDC funded 3 grantees under FOA #DD12-1207 to pilot innovative methods of conducting population-based surveillance of adolescents and adults with CHDs by linking available existing data sources. Products developed under FOA #DD12-1207 include a common case definition, core variable set, and an Access database for data transmission to CDC. These products will be the minimum surveillance requirements for both categories A and B applicants. Refer to the www.cdc.gov/ncbddd website to view these documents.