December 7, 2022, marked the 2nd “birthday” of the Congenital Heart Initiative. Since its launch in December 2020, more than 3,300 adults with congenital heart disease (CHD) have enrolled in this first-of-its-kind patient-powered registry participants, joining from all 50 states and 30 countries.
“We developed this registry together with numerous patients and providers so it could become a platform for increasing our knowledge and improving care,” says Anitha John, MD., PhD, medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital, who helped drive the registry’s creation.
“We want it to become a resource for patients and researchers, a place where they can learn more about what it means for adults who had their hearts repaired in childhood to live a long, healthy life,” said Dr. John.
“Over the past two years, more than 3,300 adult congenital heart disease (ACHD) patients from around the world, including myself, have worked to support ACHD research by participating in the Congenital Heart Initiative (CHI),” says Scott Leezer, a single-ventricle heart defect patient and co-leader of research and advocacy for the Initiative. Leezer explains that the input provided by patients themselves is an investment in better understanding adults living with CHD.
“We hope these investments will pay dividends in helping guide new research strategies for future generations of CHD patients.”
Why it matters
As the treatments for those born with congenital heart defects (CHDs) have improved over the decades, these individuals are living longer and longer. While that is most certainly a positive, it also means that as they become adults, they have a lot of worry and uncertainty about their limitations and abilities to achieve what might be considered common adult milestones. Current estimates suggest that there are nearly 2 million adults in the United States living with CHD, but it’s been historically difficult to gather data on these conditions and to identify patient needs.
Research currently underway includes the innovative Congenital Heart Initiative: Redefining Outcomes and Navigation to Adult-Centered Care (CHI-RON) study, launched in May of 2022. This pioneering study uses PCORnet®, the National Patient-Centered Clinical Research Network, to better understand how gaps in care impact the adult patient experience with CHD. So far, the study has recruited more than 1,800 patients and is exploring three distinct types of data at once: patient-reported outcomes, health insurance claims, and electronic health records (EHR). The effort is led by Children’s National and Louisiana Public Health Institute.
“PCORnet is a fantastic resource to help us fully understand the impact of gaps in CHD care,” says Tom Carton, dual-principal investigator of CHI-RON and chief data officer at the Louisiana Public Health Institute. “It is essentially turbo-charging our patient-reported data with two additional layers of insights from claims and EHRs, said Dr. Carton,
“…unlocking answers that would be impossible to achieve in isolation.”
Looking ahead to more research, the CHI now has enough participants to allow researchers to complete some important studies about pregnancy, mental health, and long-term healthcare follow-ups, all of which will kick off within the next year.
CHD patients participate in the registry entirely online through web-based electronic surveys on the Eureka platform every 4 months. Participants also receive regular newsletters that highlight findings and provide access to patient-specific resources including content from the Adult Congenital Heart Association (ACHA), a key partner. The ACHA collaboration has also given registry participants the opportunity to interact with other people – a key request identified as important based on input from people who have already registered.