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
The PHAR Steering Committee is tasked with administrative tasks, objectives and directions, legal/ethical decisions, fulfilling obligations to patients, and satisfying interests of stakeholders.
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
PHA REGISTRY LIAISON COMMITTEE
The PHAR Liaison Committee is tasked with maintaining relationships with centers, providing early feedback and ongoing advice on operations and patient and provider insights, and developing tools for monitoring satisfaction with registry conduct and the accessibility of staff.
PHA REGISTRY DATA ACCESS/PUBLICATIONS & PRESENTATIONS COMMITTEE
The Data Access/Publications and Presentation Committee is tasked with ensuring access to the registry for those in the PH community, defining the process by which investigators access and perform analyses of data, ensuring the de-identification of data before release, reviewing paper proposals, and reviewing and approving abstracts and manuscripts before submission for publication.