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