About.

Pulmonary Hypertension Association Registry

A patient organization called the Pulmonary Hypertension Association (PHA) is spearheading the PHA-Accredited PH Care Centers (PHCC) initiative to accredit centers with special expertise in PH. The PHCC initiative aims to raise the overall quality of care and improve outcomes in patients with this life-threatening disease.

A key element of the PHCC initiative is the creation of the Pulmonary Hypertension Association Registry (PHAR). The PHAR, which began gathering data in 2015, will collect patient information such as demographics, medical history, diagnostic tests, medication, and patient-reported quality-of-life. Over time, this information will be used to measure adherence to diagnostic and treatment guidelines, assess patient outcomes, improve the quality of care, and facilitate research studies in PAH and CTEPH. All PHCCs will participate in the PHAR as part of their accreditation.

PHA Registry Steering Committee (PHAR Steering)

The PHAR Steering Committee (PHAR Steering) is tasked with administrative tasks, objectives and directions, legal/ethical decisions, fulfilling obligations to patients, and satisfying interests of stakeholders.

Member Term
Steven Kawut, MD, MS (Chair) 2017 – 2018 or 20191
Daniel Grinnan, MD 2017-2019
Peter Leary, MD, MS 2017-2019
Corey Ventetuolo, MD, MS 2017 – 2018 or 20191
Ellen Newton-Lovato, RN, BSN 2018-2020
Nicole Creech
(Patient representative)
2018-2020

PHAR Liaison Committee (PHAR LC)

The PHAR Liaison Committee (PHAR LC) 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.

Member Term
Roham Zamanian, MD (Chair) 2017-2018 or 2019
Lauren Axelrod, RN 2018-2020
David Badesch, MD 2017-2018 or 2019
Todd Bull, MD 2017-2018 or 2019
Amy Chybowski, NP-C 2018-2020
Theresa Cristostomo
(Patient representative)
2017-2019
Matthew Lammi, MD 2018-2020
Steven Nathan, MD 2017-2018 or 2019
Gautam Ramani, MD 2018-2020
Jeffrey Sager, MD, MSCE 2017-2019

PHAR Data Access/Publications and 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.

Member Term
Peter Leary, MD, MS (Chair) 2017-2018 or 2019
Steven Kawut, MD, MS 2017-2018 or 2019
Richard Kronmal, PhD 2017-2018 or 2019
Stephen Mathai, MD, MHS 2017-2018 or 2019
Corey Ventetuolo, MD, MS 2017-2018 or 2019
H. James Ford III, MD 2018-2020


1 Rotation per PHAR protocol:

"After the official roll-out (>10 centers have collected at least one year of data), the long-term governance plan outlined below will be instituted.

Committee members will serve three-year terms. One-third of the members will rotate off of a given committee yearly (beginning end of 2017 with new members starting January 2018). Each committee will identify the members rotating off (volunteers first and then by random selection) and in which order this occurs with the expectation that one-third of the committee rotates off each year. The staged rotation and term length will balance the continuity that will be necessary for the long-term success of the registry and in the incorporation of new members who will bring fresh perspective. Committee members can be reappointed after one year off the committee, however new candidates will be prioritized for selection."

Documents