Home › Pulmonary Arterial Hypertension › NCT04071327
Pulmonary Hypertension Association Registry
Who can join
Ages 0 and older · All sexes
Full eligibility criteria
Inclusion Criteria: * All age groups * Written informed consent * Pulmonary arterial hypertension (PAH), chronic thromboembolic pulmonary hypertension (CTEPH), or pediatric PH due to developmental lung disease * Within 6 months of first outpatient visit at a PH Care Center Exclusion Criteria: * Diagnosis of WSPH Group 2 pulmonary hypertension * Diagnosis of WSPH Group 3 pulmonary hypertension, except PH due to developmental lung disease * Diagnosis of WSPH Group 5 pulmonary hypertension
About the study
The PHA Registry (PHAR) is a national study about people who have pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). PHAR collects information from people with PAH and CTEPH who are cared for in participating PHA-accredited Pulmonary Hypertension Care Centers throughout the U.S.
PHAR will determine how people with PAH and CTEPH are evaluated, tested, and treated, and will observe how well these participants do. The goal is to see if people with PH are treated according to recommended guidelines, and to see if there are certain factors that can lead to better or worse outcomes.
PHAR will include information about people with PAH and CTEPH in the U.S. who are seen at participating PHA-accredited PH Care Centers. PHAR contains data about patient care and outcomes. Specifically, data in the PHAR includes information on diagnosis; clinical status; socioeconomic status; diagnosis test results; body size; treatment information; interest in participating in clinical trials; family health and social history; and information about smoking, alcohol, or drug use. Participants are followed over time, and provide updates such as changes in therapy, how often participants need to go to the hospital, and survival. Such information may help healthcare providers provide better care.
Sponsor: Pulmonary Hypertension Association, Inc. · Participants: 3,000 · Started: 2015-10
Contact the study team
- Elizabeth Joseloff, PhD · Phone: 301-565-3004
- Charles D Burger, MD · Phone: 904-953-2000
Official record on ClinicalTrials.gov — NCT04071327
Locations in the U.S.
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.