Enrollment in the Pulmonary Hypertension Association Registry (PHAR) has surpassed 2,000 participants.
The registry includes data from patients at more than 80 PHA-accredited PH Care Centers. The data represents demographic characteristics, diagnosis and treatment information, and quality-of-life metrics.
PHAR participation doesn’t require patients to change their treatments or test new medications. Instead, the registry collects information about patients usual care during regular visits with their PH care teams.
Enrollment is open to people who are newly diagnosed or new to a PHA-accredited care center (within six months of first visit).Those eligible include people with pulmonary arterial hypertension (PAH), children with PH related to developmental lung disease; and people with chronic thromboembolic pulmonary hypertension.
Why participation is important
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 participation improves care
Researchers can compare information about a care center’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.
Researchers have published 11 papers based on PHAR data. See recent research.
PHA Live: A Conversation on the PHA Registry.