Washington: Adults with congenital heart disease (CHD) can now gain important information about their long-term quality of life, data from the Congenital Heart Initiative (CHI) shows. CHI is the nation's first and largest patient-centered registry for people with CHD, and it recently launched its first research, involving more than 4,500 participants from all 50 states. The study, published in JAMA Network Open, is a major step toward providing better information to the 1.5 million adults born with CHD in the United States.
Anita John, MD, Ph.D., director of the Washington Adult Congenital Heart Program at Children's National Hospital and senior author of the study, said. “Studies like this, which leverage real patient voices and experiences, help us understand how to best counsel, support, and treat people with chronic conditions as they age,” she says. Go.” “In addition, researchers get a clearer picture of the questions that need to be answered to ensure they have the best quality of life.” The treatment of children suffering from congenital heart disease has improved so much in the last two decades that life expectancy is also increasing.
“The number of adults with congenital heart disease now exceeds the number of children with CHD,” says study co-author Scott Leaser, co-principal patient investigator for the Congenital Heart Initiative Registry. “However, there is still a significant gap in what we know about the adult population of Chandigarh. As an adult patient from Chandigarh, I was excited to contribute to creating this registry, so that people like me More answers can be found for those who want to know how our unique hearts affect our bodies and quality of life over time.”
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