Research led by Louisiana Public Health Institute and Children’s National Hospital focuses on outcomes-based research, supported by the Patient-Centered Outcomes Research Institute

Nicklaus Children’s Hospital is partnering with institutions around the United States to study how gaps in health care affect the health and well-being of adults with congenital heart disease (CHD).

The research, which is supported by a $4.9 million award from the Patient-Centered Outcomes Research Institute (PCORI), will gather data on patients aged 18 years or older who have a CHD diagnosis, via the 14 participating research sites. The study draws on the vast health data resources of PCORnet®, the National Patient-Centered Clinical Research Institute, to conduct this study more efficiently. With health records for 66 million patients available for observational studies, the PCORI-funded PCORnet provides vast scale to power research on conditions affecting even small numbers of people. 

This project leverages the first patient-powered registry for adults with CHD—the Congenital Heart Initiative (CHI). Patients who are recruited for this research will participate via enrollment in the registry, which will allow researchers to ask patients directly about health, wellness and any specific barriers to care. The effort is led by Children’s National Hospital and Louisiana Public Health Institute.

“The long-term wellbeing of our patients is a top concern for all physicians who provide care for those born with congenital heart defects,” said Dr. Ronald Kanter, Director of Electrophysiology at Nicklaus Children’s. “It is our sincere hope that the study helps us gain understanding that will improve the care management for these individuals.” 

As identification, understanding and treatment of CHD have improved over the last few decades, the number of adults living with CHD now exceeds the number of children born with these various structural defects today, but little is known about long term outcomes for these adults. The new research study will combine clinical data with patient-reported data to help guide health care providers in how best to care for the unique needs of this population throughout their lives.  

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians and other healthcare decision makers with the evidence-based information needed to make better-informed healthcare choices.