Scientific Leadership
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
Nadine Al-Naamani, MD
University of Pennsylvania
Charles Burger, MD
Mayo Clinic Florida
Gloria Hamm
Patient Representative
Kishan Parikh, MD
Duke University Medical Center
Elise Whalen, MSN, APRN, FNP-C
Texas Children’s Hospital
Tonya Zeiger, RRT, CPFT
Mayo Clinic Florida
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.
Matthew Lammi, MD
University Medical Center New Orleans
Chair, PHA Registry Liaison Committee
Christina Benninger, APRN, MSN
Kentuckiana Pulmonary Associates
Todd Bull, MD
UC Denver
Amy Chybowski, NP-C
University of Wisconsin
Theresa Crisostomo
Patient Representative
H. James Ford III, MD
University of North Carolina at Chapel Hill
James Klinger, MD
Rhode Island Hospital
Nicholas Kolaitis, MD
UCSF Health
Stacy Mandras, MD
Ochsner Medical Center
Abhijit Raval, MD
AnMed Health
Kimberly Robinson, FNP-C
Kentuckiana Pulmonary Associates
Sandeep Sahay, MD
Houston Methodist Hospital
Andrew Sweatt, MD
Stanford University
John Swisher, MD, PhD
Ft. Sanders Regional Medical Center
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.
Stephen Mathai, MD, MHS
Johns Hopkins University
Chair, PHA Registry Data Access/Publications & Presentations Committee
Micheala Aldred, PhD
Indiana University
Hilary DuBrock, MD, MMSc
Mayo Clinic
J. Wesley McConnell, MD
Kentuckiana Pulmonary Associates
Christopher J. Mullin, MD
Rhode Island Hospital
Trushil Shah, MD
UT Southwestern Medical Center
Delphine Yung, MD
Seattle Children’s Hospital
Richard Kronmal, PhD
University of Washington
Ex-Officio, Non-Voting