PHA Registry Research and Abstracts

The PHA Registry (PHAR) is a multi-center, prospective, observational registry of newly evaluated patients diagnosed at accredited centers in the U.S. with WHO Group 1 PH (PAH, pulmonary arterial hypertension) or WHO Group 4 PH (CTEPH, chronic thromboembolic pulmonary hypertension), two forms of PH for which targeted treatments are available that can extend and improve patients’ lives. All centers accredited through the PH Care Centers (PHCC) program are provided the opportunity to participate in the PHAR. PHCCs that participate in PHAR collect baseline information when a patient is initially evaluated and follow-up data at approximately six-month intervals. The primary goal of the PHAR is to measure and improve quality of care — including assessing differences in centers’ adherence to evidence-based guidelines and establishing benchmarks for health outcomes — and to begin to learn relationships between adherence to expert recommended care strategies and patient outcomes. Each PHAR site can access its own data in real-time, enabling the center to understand important information about their own patient populations and care practices.

The PHAR gives accredited centers a platform to perform their own research and quality improvement initiatives and assess patient-reported outcomes, including health-related quality of life. The list below shows some of the recent presentations of PHAR data at international PH meetings.

PHA Registry Enrollment Reaches 2,022 in 2022

Enrollment in the Pulmonary Hypertension Association Registry (PHAR) has surpassed 2,000 participants. The registry includes data from patients at more than 80 PHA-accredited PH Care Centers. The data represents demographic characteristics, diagnosis and treatment information, and quality-of-life metrics.

Learn What It’s Like to Participate in PHA Registry

Join PHA at 3:30 p.m. Wednesday, Aug. 18 for “A Conversation About the PHA Registry.” Dan Grinnan, M.D., will speak with his patient, Shirl Rhodes, who is enrolled in the PHAR. Hear what it’s like to participate and how PHAR supports PH research.

Examination of PHAR Data Shows Few Patients are Referred to Palliative Care

Although treatment options for WHO Group 1 PH (pulmonary arterial hypertension, or PAH) have increased over the past few decades, symptom severity and quality of life still impose significant burden on patients. Palliative care – often confused with hospice care – is goal-oriented care for patients with chronic illnesses that help to balance life-saving treatment with quality of life. In order to determine the role of palliative care in managing PAH, Michael P. Gray, M.P.H., PHA’s senior director of medical services, and researchers through the Pulmonary Hypertension Association Registry (PHAR) examined how many patients received referrals to palliative care from their PH specialists, and how long after their diagnoses they were referred. Initial data were presented at the American Thoracic Society 2018 Annual Congress and PHA’s 2018 International PH Conference and Scientific Sessions.

Of the 276 patients examined, only 13 (5 percent) received a referral to palliative care after an average of 9.4 months of follow-up. Patients who were referred tended to be older, have a lower body mass index (BMI) and worse illness (achieved shorter 6-minute walk distances, demonstrated poor hemodynamics, were usually on IV prostacyclin and supplemental oxygen and reported worse health-related quality of life (HRQOL)).

Although palliative care is helpful for anyone with PH no matter their age or the severity of their disease, the results of this analysis show that very few patients are being referred to palliative care. Further studies are needed to identify facilitators of or obstacles to referrals to palliative care in PAH populations.

Determinants of HRQoL in PAH

American Thoracic Society 2017 International Conference
May 19-24, 2017 – Washington, DC

Poster title: Determinants of Health Related Quality of Life in PAH: Data from the Pulmonary Hypertension Association Registry

Authors: Roham T. Zamanian, David Badesch, Todd M. Bull, Teresa DeMarco, Jeremy Feldman, Jeffrey Fineman, Hubert J. Ford, Michael P. Gray, Daniel Grinnan, James R. Klinger, John W. McConnell, Erika Rosenzweig, Linda Santos, Jeffrey Sager

U.S. Hispanics with PH

American Thoracic Society 2017 International Conference
May 19-24, 2017 – Washington, DC

Poster title: Characterization of Hispanics with Pulmonary Hypertension in the US: The Pulmonary Hypertension Association Registry

Authors: Vinicio De Jesus Perez, David Badesch, Roham T. Zamanian, Jeffrey Fineman, James R. Klinger, Jim Ford, John W. McConnell, Jeffrey Sager, Jeremy Feldman, Oksana Shlobin, Daniel Grinnan, Todd M. Bull, Erika Rosenzweig, Linda Santos, Teresa DeMarco

PHAR Study Design

American Thoracic Society 2016 International Conference
May 13-18, 2016 – San Francisco

Poster title: Evaluation of Quality of Care and Quality of Life of Pulmonary Hypertension (PH) Patients Seen in PH Care Centers: Pulmonary Hypertension Association Registry (PHAR) Study Design

Authors: Michael P. Gray, Corey E. Ventetuolo, Ronald Oudiz, Wendy Hill, Cynthia Pickles, Kristina Blank, Kayleen Williams, Peter J. Leary, Richard Kronmal, Steven M. Kawut