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Pulmonary Hypertension Association Registry (PHAR)

Pulmonary Hypertension Association Registry (PHAR)

The Pulmonary Hypertension Association has spearheaded the PH Care Centers (PHCC) initiative to accredit centers with special expertise in pulmonary hypertension (PH), particularly pulmonary arterial hypertension (PAH), to raise the overall quality of care and outcomes in patients with this life-threatening disease.

One of the benefits of being accredited as a PHCC is the opportunity to enroll PH patients into the Pulmonary Hypertension Association Registry (PHAR). A patient registry is an organized system that collects 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.

Pulmonary arterial hypertension is classified as a “rare disease” because only about 30,000 people in the U.S. have this diagnosis. Because there are so few PH patients, 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 WHO Group 1 PH (pulmonary arterial hypertension [PAH]) and WHO Group 4 PH (chronic thromboembolic pulmonary hypertension [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, doctors and nurses will learn what treatments other clinicians are using that could potentially benefit their patients.

Browse this section of the website to learn more about the process and benefits of participating in PHAR.

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). 

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. PHA does not endorse or recommend any commercial products or services.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.