The Congenital Heart Initiative (CHI), the largest patient-focused registry for individuals with congenital heart disease (CHD) in the United States, has recently provided valuable insights into the long-term quality of life for adults living with CHD. The registry’s inaugural study, which included over 4,500 participants from all 50 states, was published in JAMA Network Open. This study marks a significant advancement in understanding the challenges faced by the 1.5 million U.S. adults born with CHD, particularly as improvements in pediatric treatments over the last two decades have led to longer life expectancies.
“Studies like this that leverage actual patient voices and experiences help us get a better sense of how to advise, support and treat people with CHD as they age,” states Anitha John, M.D., Ph.D., director of the Washington Adult Congenital Heart program at Children’s National Hospital and senior author of the study. “Also, researchers get a clearer picture of the questions that need to be answered to make sure they have the best quality of life possible.”
Despite its groundbreaking nature, the study and the registry data have certain limitations. One major challenge is that the registry only includes patient-reported outcomes and lacks clinical data. To address this, the CHI-RON study, a sub-study of the initiative, is gathering additional data sources from a subset of consenting participants.
“There are now more adults living with congenital heart disease than there are children with CHD,” states Scott Leezer, patient co-principal investigator for the Congenital Heart Initiative registry and co-author of the study. “However, a significant gap remains in what we know about the adult CHD population. As an adult CHD patient, I was excited to contribute to creating this registry, bringing more answers to people like me who want to know how our unique hearts impact our bodies and quality of life over time.”
Other limitations include potential recall bias, neurocognitive issues, and survey fatigue, which may have restricted participation to a smaller group of adults with CHD. Efforts are underway to enhance inclusivity by developing methods that allow individuals with neurodevelopmental or other disabilities to engage more fully in the registry.
“We are grateful for everyone who joined this registry, answered survey questions and shared their experiences,” states Thomas Carton, Ph.D., chief data officer at Louisiana Public Health Institute and study co-author. “The CHI registry is a big step forward for adults with CHD, but also can serve as a model for how to bring together physicians, researchers and patients as active participants in care, research and advocacy.”
Currently, the CHI is closed to new participants as the study is being redesigned to better meet the community’s needs. This pause will allow the researchers to refine their approach and continue improving the understanding of long-term outcomes for adults with CHD.
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