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Patient-centered study of adult congenital heart disease awarded $4.9 million

PCORI award to Louisiana Public Health Institute, Children's National Hospital supports outcomes research conducted via PCORnet®

The Patient-Centered Outcomes Research Institute (PCORI) has awarded $4.9 million to investigators at the Louisiana Public Health Institute (LPHI) and Children’s National Hospital to study how gaps in health care affect the health and well-being of adults with congenital heart disease (CHD). 

The award supports the research team’s efforts to gather data on patients aged 18 years or older who have a CHD diagnosis, via 14 sites across the country. The study will draw 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 will leverage the first patient-powered registry for adults with CHD—the Congenital Heart Initiative (CHI). Led by the team at Children’s National and launched with seed funding from the Heart Research Alliance at University of California - San Francisco (UCSF), the CHI was co-developed with input from patients, clinicians and researchers. 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.   

“This unprecedented look at the health of adults living with congenital heart disease allows us to get a full spectrum view by combining clinical data with patient-reported health data,” said LPHI Chief Data Officer and Principal Investigator Thomas Carton. 

The research is led by Thomas Carton and Anitha John, M.D., Ph.D., medical director of the Washington Adult Congenital Heart Program at Children’s National, two patient co-investigators, Ruth Phillippi and Scott Leezer, in addition to Mark Roeder from the Adult Congenital Heart Association and Anu Agarwal, M.D., representing the Heart Research Alliance at UCSF. Together, the team will examine rates of complications or associated illnesses, as well as how adult patients have accessed health care throughout their lives. The findings may help predict which patients are at greater risk of falling out of routine health care and when these gaps in care are likely to occur across a patient’s lifespan. 

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. 

“With the increasing number of adult patients with CHD, it is important for us to understand how current recommended practices influence patient outcomes,” says Dr. John. “This project will guide us on how to best care for our patients, not just through childhood, but across their entire lifespans.”

PCORI’s Board has approved this award pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract. 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 health care choices.

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