Silver Spring, Md. (May 18, 2017) – Researchers will present two abstracts based on information from the Pulmonary Hypertension Association Registry (PHAR) at the American Thoracic Society (ATS) meeting this month. The PHAR is a part of the Pulmonary Hypertension Association (PHA) Pulmonary Hypertension Care Center (PHCC) accreditation program.
Pulmonary arterial hypertension (PAH) — a progressive, life-threatening, debilitating form of pulmonary hypertension (PH) — is high blood pressure of the lungs due to narrowing of the pulmonary arteries. It forces the right side of the heart to pump harder to move blood into the lungs and can lead to heart failure. Symptoms are non-specific and include shortness of breath, fatigue and chest pain. Because patients go months, sometimes years, believing they have something other than PH, most patients are ultimately diagnosed with an advanced form of the disease. With early and accurate diagnosis, quality care and appropriate PAH treatments can extend and improve the quality of life for many patients.
With the recent addition of the three adult-treating Regional Clinical Programs (RCP), 50 programs (including six pediatric and forty-one adult Centers of Comprehensive Care) in 27 states across the U.S. have earned accreditation since the quality improvement initiative launched less than three years ago. To continue striving for better quality of care in the treatment of PH, the PHCC program encourages all accredited sites to participate in the PHAR. As of May 2017, 18 accredited sites are participating in the PHAR and have already enrolled 253 patients.
At the upcoming ATS meeting in Washington D.C. , on behalf of the entire PHAR study group investigators,* Roham T. Zamanian, MD (Stanford University) will present Determinants of Health Related Quality of Life in PAH: Data from the Pulmonary Hypertension Association Registry.
On behalf of his study group investigators,** Vinicio De Jesus Perez, M.D., (Stanford University) will present Characterization of Hispanics with Pulmonary Hypertension in the US: The Pulmonary Hypertension Association Registry.
The PHAR is a multi-center, prospective, observational registry of newly evaluated patients diagnosed at accredited centers in the United States with PAH or chronic thromboembolic pulmonary hypertension (CTEPH), two forms of PH for which targeted treatments are available that can extend and improve patients’ lives. PHAR-participating centers 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 explore relationships between adherence to expert recommended care strategies and patient outcomes. 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. 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.
*Determinants of Health Related Quality of Life in PAH: Data from the Pulmonary Hypertension Association Registry investigators include: Roham T. Zamanian, M.D., Stanford University; Todd M. Bull, M.D., University of Colorado, Denver; Teresa DeMarco, M.D., University of California San Francisco; Jeremy Feldman, M.D., Arizona Pulmonary Specialists, Phoenix, Ariz.; Jeffrey Fineman M.D., University of California San Francisco; Hubert J. Ford, M.D., University of North Carolina at Chapel Hill; Michael P. Gray, Pulmonary Hypertension Association; Daniel Grinnan, M.D., Richmond, Virginia; James R. Klinger, M.D., Brown University; John W. McConnell, M.D., Kentuckiana Pulmonary Associates, Louisville, Kentucky; Erika Rosenzweig, M.D., Columbia University Medical Center, New York; Linda Santos, patient representative; and ; Jeffrey Sager, M.D., USC Santa Barbara.
** Characterization of Hispanics with Pulmonary Hypertension in the US: The Pulmonary Hypertension Association Registry investigators include: Vinicio De Jesus Perez, M.D., Stanford University; David Badesch, M.D., University of Colorado, Denver; Roham T. Zamanian, M.D., Stanford University; Jeffrey Fineman M.D., University of California San Francisco; James R. Klinger M.D., Brown University; Jim Ford, M.D., University of North Carolina at Chapel Hill; John W. McConnell, M.D., Kentuckiana Pulmonary Associates, Louisville, Kentucky; Jeffrey Sager, M.D., USC Santa Barbara; Jeremy Feldman, M.D., Arizona Pulmonary Specialists, Phoenix, Ariz.; Oksana Shlobin, M.D., INOVA Fairfax, Virginia; Daniel Grinnan, M.D., Medical College of Virginia; Todd M. Bull, M.D., University of Colorado, Denver; Erika Rosenzweig, M.D., Columbia University Medical Center, New York; Linda Santos, patient representative; and Teresa DeMarco, M.D., University of California San Francisco.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at www.facebook.com/PulmonaryHypertensionAssociation.
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