A new Data Analysis Service launched this week by the Pulmonary Hypertension Association (PHA) enables researchers and organizations not involved in PHA’s Pulmonary Hypertension Association Registry (PHAR) to use data from the multi-center patient registry. PHAR is part of an innovative and critical PHA initiative to improve care for persons with pulmonary hypertension (PH), as well as our understanding of the disease and those affected, with the aim to improve patient outcomes.
Data for the registry is collected through PHA-accredited Pulmonary Hypertension Care Centers (PHCCs) which enroll patient volunteers within the first six months of evaluation and/or treatment. The patient database includes demographic characteristics, results of diagnostic tests, PH-specific treatments and quality of life metrics from people with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) – World Health Organization (WHO) Groups 1 and 4.
In the past three years, PHAR expanded significantly to 40 participating PHA-accredited PHCCs with 731 patients enrolled, contributing more than 500 person-years of follow-up data. Researchers and health care professionals use data collected in the registry to study disease patterns in the hopes of learning more about the disease, as well as developing knowledge of future PH research to learn best practices and develop new PH treatments.
PHA has supported accredited centers participating in PHAR with data analyses of research questions, leading to eight scientific presentations at professional society meetings in recent years. Under the new program, research by PHAR investigators, a State of the Registry Report and PHAR-approved research analysis may be requested for a fee by investigators or organizations not participating as a PHAR clinical site (e.g., government agencies and insurance, market research and pharmaceutical companies, and other organizations and individuals interested in PH).
All PHAR Data Analysis Service requests will be reviewed and approved by PHAR scientific leadership and all analyses will be completed by PHAR’s Data Coordinating Center, the University of Washington. If approved, a report that answers the submitted question will be provided to the requesting individual or organization. Individual patient data (identifiable or de-identified) will never be shared through the PHAR Data Analysis Service.
For more information on the PHA Registry and the PHAR Data Analysis Service, contact MichaelG@PHAssociation.org.