Pulmonary Hypertension Association Registry
The Pulmonary Hypertension Association launched the PH Care Center (PHCC) initiative to accredit centers with special expertise in pulmonary hypertension (PH), particularly World Health Organization (WHO) Group 1 PH (pulmonary arterial hypertension, or PAH), to raise the overall quality of care and outcomes in patients with this life-threatening disease.
PHA-accredited PHCCs have the opportunity to enroll PH patients into the Pulmonary Hypertension Association Registry (PHAR). A patient registry is an organized database that collects patient data to evaluate certain outcomes for a population of people with a medical condition (like PH) and is a useful tool for learning more about rare diseases.
PAH is classified as a rare disease because only about 30,000 people in the U.S. have this diagnosis. 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.
PHAR collects data from individuals with PAH, pediatric PH due to developmental lung disease and WHO Group 4 PH (chronic thromboembolic pulmonary hypertension, or CTEPH) who are starting evaluation and/or treatment at a PHCC. Over time, PHAR will help researchers evaluate trends and practice patterns to determine which treatments work best. Also, health care professionals will learn what treatments other clinicians are using that could potentially benefit their patients.
PHAR is supported by generous donations from the PH community, and by grants from the Express Scripts Foundation and the Cardiovascular Medical Research and Education Fund (CMREF).