PCORnet^®, the National Patient-Centered Clinical Research Network, aims to improve the nation’s capacity to conduct health research by creating a large, highly representative network for conducting clinical outcomes research. In 2020, PCORI launched an initiative on Conducting Rare Disease Research using PCORnet to answer important questions about the treatment and management of rare diseases or conditions. The initiative funded this research project and others.

This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.

What is the research about?

Congenital heart defects, or CHDs, are the most common type of birth defect. CHDs can be noncomplex or complex. Examples of noncomplex CHDs include an issue with one heart valve or a hole in the heart. Complex CHDs may affect several parts of the heart or the way the blood circulates. Nearly 150,000 adults in the United States have a complex CHD.

Guidelines from the American Heart Association and the American College of Cardiology recommend that patients with complex CHDs see a heart doctor every one to two years. But many patients don’t see a heart doctor until they have serious health problems.

In this study, the research team is looking to see how often adults with CHDs receive recommended care from a heart doctor. The team also wants to learn how outcomes differ when patients do or do not receive recommended care from a heart doctor.

Who can this research help?

Results may help doctors and healthcare administrators when considering how best to care for patients with a CHD. Results may also help guideline developers create recommendations on care for patients with a CHD.

What is the research team doing?

This study has three parts. In the first two parts, the research team is using data from 91,126 adults with a noncomplex or complex CHD from 12 PCORnet® sites and one non-PCORnet site. PCORnet is made up of networks of health systems that gather data from electronic health records, or EHRs, and transform them into a common format.

In the first part of the study, the research team is comparing health outcomes related to CHD and use of healthcare services among patients who did and did not receive care from a heart doctor. In the second part, the team is looking to see what predicts whether patients receive care from a heart doctor.

In the third part of the study, PCORnet sites are asking at least 3,000 patients to become part of the Congenital Heart Initiative, or CHI. The CHI is a patient registry where researchers can survey patients about their health and the care they are receiving. The research team is combining survey data with EHR data to see if quality of life and physical and mental health are different for patients who do and do not receive care from a heart doctor.

Adult patients with a CHD, their families, and patient advocacy organizations are helping to plan and conduct this study.

Research methods at a glance