PHA Registry (PHAR) Committees
The Mission of the PHA Registry: The ultimate goal of the PHAR is to improve the quality of life and survival of PH patients.
Purpose and Objectives
- Measure and improve quality of care.
- Assess relationship of good care with outcomes important to patients.
- Determine clinical, comparative, and cost-effectiveness of treatment approaches.
- Understand risk factors for outcomes and regional/center differences.
- Facilitate funded clinical trials of new therapies.
- Collaborate with the PAH community at large (providers/patients/caregivers).
To achieve this mission, the PHCC initiative seeks applicants for the PHAR Steering Committee, PHAR Data Access/Publications and Presentations Committee. Applicants must be employed at a PHA-accredited PHAR-participating clinical site and maintain current membership in PHCR or PHPN.
PHAR Steering Committee
The PHAR Steering Committee is responsible for:
- Administrative tasks
- Objectives and directions
- Legal/ethical decisions
- Fulfilling obligations to patients
- Satisfying interests of stakeholders
PHAR Data Access/Publications and Presentations Committee
The PHAR Data Access/Publications and Presentations Committee is tasked with:
- Ensuring access to the registry for those in the PH community
- Defining the process by which investigators access data and perform analyses
- Ensuring the de-identification of data before release
- Reviewing paper proposals
- Reviewing and approving abstracts and manuscripts before submission for publication.
PHA Registry (PHAR) Committees Application
The PHCC initiative seeks applicants for the PHAR Steering Committee and the PHAR Data Access/Publications and Presentations Committee. Applicants must be employed at a PHA-accredited PHAR-participating clinical site and maintain current membership on PHCR or PHPN. Please indicate which committee(s) you would like to be considered and submit your application by COB at 5:00 p.m., Eastern Time, on Monday, July 10, 2023.
Please note, applications must be completed in one sitting to avoid losing your responses.