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Adults with congenital heart disease (CHD) can now gain important insight into their long-term quality of life, according to data from the Congenital Heart Initiative (CHI). CHI is the nation’s first and largest patient-centered registry of people with CHD, and it recently launched its inaugural research, which included more than 4,500 participants from all 50 states.
The study, published in JAMA Network Open, represents a major step toward providing better information to the 1.5 million adults born with CHD in the United States.
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“Studies like this that take advantage of real patient voices and experiences help us gain a better understanding of how to counsel, support, and treat people with CHD as they age,” says Washington Adult Congenital MD, PhD. , says Anita John. Heart Program at Children’s National Hospital and senior author of the study. “In addition, researchers get a clearer picture of the questions that need to be answered to ensure that they have the best quality of life possible.”
Treatment of congenital heart disease:
Treatment of children born with congenital heart disease has improved so much in the last two decades that life expectancy is also increasing.
“There are now more adults with congenital heart disease than children with CHD,” says study co-author Scott Leaser, patient co-principal investigator of the Congenital Heart Initiative Registry. “However, there remains a significant gap in what we know about the adult CHD population. As an adult CHD patient, I was excited to contribute to creating this registry, which will bring more information to people like me. Get the answers you want to know about how our unique hearts impact our bodies and quality of life over time.”
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The authors note that the study findings and registry data currently have some limitations. First, the registry contains only patient-reported outcomes and no clinical data. The first sub-study of CHI, the CHI-RON study, addresses this challenge by including additional data sources for a subgroup of consenting CHI participants.
Additionally, recall bias, underlying neurocognitive challenges, and survey fatigue may have limited participation in the CHI to a small subgroup of adults with CHD. Efforts are underway to develop ways for people with congenital heart disease who also have neurodevelopmental deficits or other disabilities to join the registry. CHI is temporarily closed to new registrants as the study team redesigns the study to better align with the needs of the community.
“We are grateful to everyone who joined this registry, answered survey questions, and shared their experiences,” says Thomas Carton, PhD, chief data officer at the Louisiana Public Health Institute and a co-author of the study. “The CHI Registry is a major step forward for adults with CHD, but it can also serve as a model for bringing physicians, researchers, and patients together as active participants in care, research, and advocacy.”
As the registry grows in the future, it will focus on increasing the diversity of participants, developing additional partnerships with other organizations, continued innovation in data use, and improved community engagement, all aimed at guiding future research that Will ultimately improve the quality of life of the people. All adults with CHD.
Also read: Is your child’s heart at risk? Here’s the life-saving test every parent should know about
Disclaimer: This article is for informational purposes only and is not a substitute for professional medical advice. Always seek the advice of your doctor with any questions you may have about a medical condition.
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