This project leverages the first patient-driven registry for adults with CHD – the Congenital Heart Initiative (CHI). Patients recruited for this research participate via enrollment in the registry, which allows researchers to interview patients directly about health, well-being and specific barriers to care. The effort is led by Children’s National Hospital and the Louisiana Public Health Institute.
“The long-term well-being of our patients is a key concern of all physicians who care for people with congenital heart disease,” said Dr. Ronald Kanter, Director of Electrophysiology at Nicklaus Children’s. “We sincerely hope that the study will help us generate insights that improve care management for these individuals.”
As the detection, understanding, and treatment of CHD has improved over the past few decades, the number of adults living with CHD now outstrips the number of children born with these various structural defects, but little is known about the long-term outcomes known to these adults. The new research study will combine clinical data with patient-reported data to help healthcare providers determine how best to meet the unique needs of this population throughout their lives.
PCORI is an independent, not-for-profit organization authorized by Congress in 2010 to fund research that provides patients, their caregivers and physicians and other healthcare decision-makers with the evidence-based information needed to make more informed healthcare decisions.
About the Nicklaus Children’s Hospital
Nicklaus Children’s Hospital was founded in 1950 by Variety Clubs International South Florida only licensed specialty hospital exclusively for children with almost 800 attending physicians, including more than 390 pediatric subspecialists. Known as the Miami Children’s Hospital from 1983 to 2014, the 309-bed hospital is known for excellence in all aspects of pediatric medicine with many specialty programs that routinely rank among the best in the country US News & World Report since 2008. The hospital is also home to the largest pediatric teaching program in the Southeast United States and was named a magnet by the American Nurses Credentialing Center (ANCC), the nursing profession’s most prestigious institutional award. Visit www.nicklauschildrens.org for more information
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Rachel Perry Bixby
SOURCE Nicklaus Children’s Hospital