The Pulmonary Hypertension Association Registry: Rationale, Design, and Role in Quality Improvement

Abstract

The Pulmonary Hypertension Association (PHA) Scientific Leadership Council (SLC) prioritized the development of the PH Care Centers (PHCC) initiative in part to identify centers that adhere to expert consensus diagnostic and treatment guidelines in both community and academic practice settings, decreasing the chances of misdiagnosis and inappropriate medical management. The overall goal of the PHCC is to improve outcomes of patients with pulmonary hypertension (PH). It is generally accepted that measurement of processes and outcomes are required in order to improve quality of care: the degree to which health services increase the likelihood of desired health outcomes and are consistent with current professional knowledge. The PHA Registry (PHAR) was developed to collect data regarding key measures to facilitate the achievement of these goals of the PHCC.