Congenital heart defects (CHD)s are the most prevalent group of birth defects in the United
States (US). These defects affect about 1% of all births, are a leading cause of infant mortality,
and contribute substantially to healthcare expenditures. With improvements in CHD treatment
leading to improved survival for affected individuals, the federal Patient Protection and
Affordable Care Act (PPACA) authorized the Centers for Disease Control and Prevention (CDC) to establish a national population–based surveillance system to track the epidemiology of CHDs. To date, activities funded by the CDC in response to the PPACA have identified CHD cases via
healthcare encounters listed with CHD codes and ascertained from various data sources. The
current Notice of Funding Opportunity (RFA – DD19 – 1902, Component A) will build upon this prior work by conducting surveillance of individuals aged 1–45 years with CHDs in order to examine the descriptive epidemiology, survival, healthcare utilization, comorbidities, and other outcomes for these individuals. This work will advance population-based, longitudinal surveillance
methodologies for CHDs and also assess survival and identify healthcare encounters and nonhealthcare information for individuals with CHDs over an extended follow–up period. The Iowa Registry for Congenital and Inherited Disorders (IRCID) has been the bona fide agent for
population–based surveillance of congenital and inherited disorders in Iowa for over 35 years.
The IRCID, in partnership with the Reproductive Molecular Epidemiology Research and Education Program, has successfully conducted longitudinal surveillance for congenital and inherited disorders for nearly 20 years. Together, our programs are recognized as national experts in population–based, longitudinal surveillance of congenital and inherited disorders for their work with birth defects, muscular dystrophies, and newborn screening disorders and have been highly successful in establishing effective relationships with key clinical and state partners to successfully meet programmatic objectives. The proposed project will use our highly skilled team to conduct population–based, longitudinal surveillance for CHDs using active, multiple source case finding and record abstraction. We propose to work collaboratively with CDC investigators and grant awardees, along with key local partners, to implement standardized surveillance methods and data collection activities for CHDs. To accomplish this, we aim to: 1) build capacity for population–based, longitudinal surveillance of CHDs in Iowa through collaboration with partners and infrastructure improvements; 2) establish a cohort of CHD cases; 3) compile data from all record sources during the eligibility period of January 1, 2008 – December 31, 2017; 4) examine the descriptive epidemiology of CHD cases via analysis of local (Iowa) data and pooled (grant awardee) data; and 5) disseminate data to healthcare providers, partners, policy–makers, and families. Our proposed activities are responsive to the PPACA charge to establish populationbased, longitudinal surveillance for CHDs in the US and facilitate further inquiry into healthcare services used by individuals with CHDs and areas for educational outreach and prevention. Our proposed activities also will guide public health agencies in developing and providing policies and
programs to ensure access to comprehensive healthcare services and link individuals with CHDs
and their families to social services that will improve quality of life.