People with pulmonary hypertension (PH) are increasingly signing on to help researchers better understand PH. Thanks to growing participation in the Pulmonary Hypertension Association Registry, researchers have better access than ever to data from people with PH.
PHAR enrollment recently surpassed a new milestone with more than 1,700 patients. The registry represents data from more than 60 PHA-accredited PH Care Centers.
PHAR collects data from people with pulmonary arterial hypertension (PAH), pediatric PH due to developmental lung disease and chronic thromboembolic pulmonary hypertension (CTEPH). PHAR data includes demographic characteristics, diagnosis and treatment information, and quality-of-life metrics.
PHAR participation doesn’t require patients to change their treatment or test a new medication. Instead, the registry collects information about their usual care during usual visits with their PH care teams.
Patients who are newly diagnosed or new to a PHA-accredited care center (within six months of first visit).
How it works
A patient and member of the care team fill out questionnaires on a computer tablet. Patients update the data when they return for three- or six-month visits, either in person or through televisit.
The data is sent s by secure connection to the University of Washington, which organizes and prepares the data for researchers. It also strips identifying information from the data to protect patient privacy.
Researchers use the PHAR database to learn more about PH. Each patient entry in the database potentially could lead to improvements in patient care, new treatments, earlier diagnosis or ultimately a cure.
PHAR is the largest, active PH patient registry in the United States. Researchers need data from as many patients as possible to make meaningful discoveries about PH.
How PHAR helps improve care
PHAR delivers information to PH care teams that can help them learn more about their PHCCs and PH care.
Researchers can compare information about a PHCC’s patient base to national averages. As a result, the care centers can identify opportunities to enhance care.
Patient surveys can open conversations between patients and providers about how health-related quality of life and similar topics.
Patient data also helps health care professionals better understand how various factors affect patient health, such as geography, differences among PH care center practices and socioeconomic limitations and quality of life.
See recent research based on PHAR data.
Hear from PHAR participant Shirl Rhodes and her doctor, Dan Grinnan, M.D., in the PHA Live event, “A Conversation on the PHA Registry.” Dan Grinnan is director of Virginia Commonwealth University Health’s Comprehensive Care Center for Pulmonary Hypertension.