All PHA-accredited Pulmonary Hypertension Care Centers are eligible and expected to enroll their PH patients in PHAR as part of their accreditation criteria. Through this effort, the PHAR:

  • Measures and works to improve overall quality of care.
  • Assesses how quality care affects patient-centered outcomes.
  • Evaluates clinical, comparative and cost-effectiveness of treatment approaches.
  • Identifies risk factors and examines regional and center-level differences in care.
  • Enables the development and execution of funded clinical trials for emerging treatments.
  • Promotes collaboration with the broader PH community.

Patient participation

Patient participation in the registry can improve quality of care over time. Their data:

  • Helps researchers understand disease patterns, secure research funding, develop new treatments and move closer to a cure.
  • Allows health care professionals to learn best care practices from each other and improve patient care.
  • Becomes accessible to their health care team, supporting informed discussions and treatment decisions.

To participate in the registry, individuals must receive care at an accredited PHCC and meet the PHAR’s inclusion criteria, which includes a confirmed diagnosis. Participation is voluntary, and patients must provide informed consent to share their health information for research purposes. Learn more about what data PHAR collects and how it’s used to improve care.

PHAR benefits for health care professionals

Health care professionals receive reports about their enrolled patients, enabling them to compare outcomes to national data. This information can highlight areas for improvement. For example:

  • What percentage of patients received a right heart catheterization?
  • How many patients are on IV therapies?
  • How many hospitalizations occurred at the center last year?

Recent research

PHAR is a vital resource driving clinical research in PH. PHAR data has informed more than 50 research proposals, generated multiple conference abstracts and contributed to over 20 peer-reviewed publications. These studies highlight PHAR’s growing impact on advancing knowledge, improving care and supporting the development of new therapies.

Recent Research
scientist conducting genetic test

Value for the scientific community

The PHAR provides updated insights into the natural course of PH in an era with multiple treatment options. With 16 FDA-approved therapies and more in development, survival continues to improve.

Researchers with specific questions about PH can apply to access data from the registry by submitting a proposal outlining how they plan to use the data. A panel of PH experts reviews each submission for relevance and feasibility. Once approved, investigators receive a limited dataset to pursue their proposals. PHA expects approved research to be published to further contribute to the understanding of PH.