Pulmonary Hypertension Association Registry
Recruiting now NCT04071327
Run by Pulmonary Hypertension Association, Inc. · for 0 and older · All sexes
What this study is about
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.
Who can join (things the study team will check)
✅ You may be able to join if…
- 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
🚫 You may not be able to join if…
- 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
Where this trial is running
- Arizona Pulmonary Specialists, Ltd., Phoenix, Arizona, United States
- UC Davis Health, Sacramento, California, United States
- UCSF Medical Center, San Francisco, California, United States
- UCSF Benioff Children's Hospital, San Francisco, California, United States
- Cottage Health System - Santa Barbara Pulmonary Associates, Santa Barbara, California, United States
- Stanford University, Stanford, California, United States
- Children's Hospital Colorado, Aurora, Colorado, United States
- UC Health - Anschutz Medical Campus, Aurora, Colorado, United States
- University of Connecticut Health, Farmington, Connecticut, United States
- Mayo Clinic Florida, Jacksonville, Florida, United States
- Northside Hospital, Atlanta, Georgia, United States
- Indiana University Health, Indianapolis, Indiana, United States
+ 40 more sites.
Who to contact
Elizabeth Joseloff, PhD · 301-565-3004 · PHAR@PHAssociation.org
It's completely normal to call and ask questions before deciding anything. Mention the study ID: NCT04071327.
Verify everything on the official ClinicalTrials.gov record. Page updated July 2026.