This year marks the 10th anniversary of the Pulmonary Hypertension Association Registry, a critical resource that now includes data from more than 3,500 patients. Over the past decade, PHAR has empowered health care providers and researchers to drive evidence-based practice, improve patient care and fuel innovations in treatment.

Patients who receive care at a Pulmonary Hypertension Care Centers have the opportunity to enroll into PHAR. For those who opt in, data is collected throughout their evaluation and treatment process to determine best care practices moving forward. Data is collected from all groups of PH and pediatric patients.

Because there are so few people with PH, looking at data for patients from just one PHCC will not provide enough information for researchers to make meaningful discoveries about PH. Analysts need to compile data from as many patients as possible to share with other health professionals and create best practices and standards of care.

Nadine Al-Naamani, a pulmonologist at the University of Pennsylvania and the PHAR Steering Committee Chair, underscores the registry’s impact on research and patient care.

“The PHAR is an invaluable data source that allows pulmonary hypertension physicians and researchers to explore many patient-centered outcomes and quality metrics. Access to PHAR data has allowed many junior physician-scientists from our center to address important questions, present findings at local and international conferences and publish in peer-reviewed journals to advance PH research and patient care.

To celebrate, PHA recognizes five-year milestones in the PHAR’s growth.

In 2015, the PHAR launched as a pilot program at six accredited PH Care Centers: University of Pennsylvania, Inova Fairfax, Rhode Island Hospital, Stanford University, University of Colorado Denver and Cottage Health. Now all 99 PH Care Centers across the nation offer patients to participate in PHAR.

In 2020, PHAR researchers published their first peer-reviewed study, which examined age-related differences in hemodynamic and functional assessments in PAH. The registry has since produced 19 publications and counting. Read the first PHAR publication.

Now, in 2025, PHAR investigators published a new study on medication non-adherence in PH patients in the Annals of American Thoracic Society. Read the abstract.

Learn more about the PHAR and its contributions to patient care.