In September 2011, the PH Care Centers (PHCC) program was designed to address quality of care concerns in two types of PH: pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). Identification of centers in the United States treating patients in accordance with expert consensus guidelines was seen as a necessary step to improve overall quality of care.
As the accreditation structure was being defined, members of the PHA Board of Trustees, the PHA Scientific Leadership Council, and other key stakeholders in the PH community recognized an important need to design a way to track these expected quality of care improvements. A steering committee and task forces were organized and staffed to develop a United States patient registry, designed to provide an updated understanding of pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH), as well as measure quality of care in the United States. The members below have been working since 2013 researching, accumulating and documenting information, defining action steps and implementing the PHA Registry (PHAR).
PHA REGISTRY STEERING COMMITTEE
Daniel Grinnan, MD
Virginia Commonwealth University
Chair, PHA Registry Steering Committee
Charles Burger, MD
Mayo Clinic Florida
Ellen Newton-Lovato, RN, BSN
Washington University School of Medicine
Kishan Parikh, MD
Duke University Medical Center
Corey Ventetuolo, MD, MS
Elise Whalen, MSN, APRN, FNP-C
Texas Children’s Hospital