Pulmonary Hypertension Association Registry
A patient organization called the Pulmonary Hypertension Association (PHA)
is spearheading the PHA-Accredited PH Care Centers (PHCC) initiative
to accredit centers with special expertise in PH.
The PHCC initiative aims to raise the overall quality of care and improve outcomes
in patients with this life-threatening disease.
A key element of the PHCC initiative is the creation of the
Pulmonary Hypertension Association Registry (PHAR). The PHAR, which began gathering data in 2015,
will collect patient information such as demographics, medical history, diagnostic tests,
medication, and patient-reported quality-of-life. Over time, this information will be used
to measure adherence to diagnostic and treatment guidelines, assess patient outcomes,
improve the quality of care, and facilitate research studies in PAH and CTEPH.
All PHCCs will participate in the PHAR as part of their accreditation.