Pulmonary Hypertension Association Registry
Recruiting now
Conditions studied: Pulmonary Arterial Hypertension, Chronic Thromboembolic Pulmonary Hypertension, Pulmonary Hypertension
In brief
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.
Key facts
- Study ID
- NCT04071327
- Run by
- Pulmonary Hypertension Association, Inc.
- People needed
- 3000
- Starts
- 2015-10-01
- Expected to finish
- 2025-12-01
- Last updated by the study team
- 2025-11-14
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify 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 qualify 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 it is running
- UC Davis Health — Sacramento, California, United States (enrolling)
- Arizona Pulmonary Specialists, Ltd. — Phoenix, Arizona, United States (enrolling)
- UCSF Benioff Children's Hospital — San Francisco, California, United States (enrolling)
- Cottage Health System - Santa Barbara Pulmonary Associates — Santa Barbara, California, United States (enrolling)
- UCSF Medical Center — San Francisco, California, United States (enrolling)
- Children's Hospital Colorado — Aurora, Colorado, United States (enrolling)
- UC Health - Anschutz Medical Campus — Aurora, Colorado, United States (enrolling)
- University of Connecticut Health — Farmington, Connecticut, United States (enrolling)
- Mayo Clinic Florida — Jacksonville, Florida, United States (enrolling)
- Northside Hospital — Atlanta, Georgia, United States (enrolling)
- Stanford University — Stanford, California, United States (enrolling)
- University of Iowa Hospitals & Clinic — Iowa City, Iowa, United States (enrolling)
- KU Medical Center — Kansas City, Kansas, United States (enrolling)
- Kentuckiana Pulmonary Associates — Louisville, Kentucky, United States (enrolling)
- Ochsner Medical Center — Jefferson, Louisiana, United States (enrolling)
- LSU Healthcare Network Clinic — New Orleans, Louisiana, United States (enrolling)
- University of MD Medical Group, PA — Baltimore, Maryland, United States (enrolling)
- Johns Hopkins University — Baltimore, Maryland, United States (enrolling)
- Henry Ford Hospital — Detroit, Michigan, United States (enrolling)
- University of Minnesota Health — Minneapolis, Minnesota, United States (enrolling)
- Mayo Clinic — Rochester, Minnesota, United States (enrolling)
- Washington University in St. Louis — St Louis, Missouri, United States (enrolling)
- Weill Cornell Medical Center — New York, New York, United States (enrolling)
- Columbia University Medical Center/NewYork-Presbyterian Hospital — New York, New York, United States (enrolling)
- University of Rochester Medical Center — Rochester, New York, United States (enrolling)
Full record on ClinicalTrials.gov
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