Pulmonary Hypertension Association Registry (NCT04071327)
🩺 Plain-English Summary (8th-Grade Level)
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: Review the eligibility criteria below.
Location: Arizona Pulmonary Specialists, Ltd. — Phoenix, Arizona
Age range: 0 Years
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (52 Sites)
Showing the first 25 of 52 sites.
- Arizona Pulmonary Specialists, Ltd. — Phoenix, Arizona
- UC Davis Health — Sacramento, California
- UCSF Medical Center — San Francisco, California
- UCSF Benioff Children's Hospital — San Francisco, California
- Cottage Health System - Santa Barbara Pulmonary Associates — Santa Barbara, California
- Stanford University — Stanford, California
- Children's Hospital Colorado — Aurora, Colorado
- UC Health - Anschutz Medical Campus — Aurora, Colorado
- University of Connecticut Health — Farmington, Connecticut
- Mayo Clinic Florida — Jacksonville, Florida
- Northside Hospital — Atlanta, Georgia
- Indiana University Health — Indianapolis, Indiana
- University of Iowa Hospitals & Clinic — Iowa City, Iowa
- KU Medical Center — Kansas City, Kansas
- Kentuckiana Pulmonary Associates — Louisville, Kentucky
- Ochsner Medical Center — Jefferson, Louisiana
- LSU Healthcare Network Clinic — New Orleans, Louisiana
- University of MD Medical Group, PA — Baltimore, Maryland
- Johns Hopkins University — Baltimore, Maryland
- Henry Ford Hospital — Detroit, Michigan
- University of Minnesota Health — Minneapolis, Minnesota
- Mayo Clinic — Rochester, Minnesota
- Washington University in St. Louis — St Louis, Missouri
- Weill Cornell Medical Center — New York, New York
- Columbia University Medical Center/NewYork-Presbyterian Hospital — New York, New York
📞 Contact the Study Coordinator
Phone: (301) 565-3004
Email: PHAR@PHAssociation.org
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Pulmonary Arterial Hypertension
- A Clinical Study of Sotatercept (MK-7962) in People With Pulmonary Arterial Hypertension (MK-7962-031/LIGHTRAY EXTENSION) — Aurora, Colorado
- A Study of a Mean Pulmonary Artery Pressure-Targeted Approach With Early and Rapid Treprostinil Therapy to Reverse Right Ventricular Remodeling in Participants With Pulmonary Arterial Hypertension — Phoenix, Arizona
- Pulmonary Vascular Disease Phenomics Program PVDOMICS — Tucson, Arizona
- An Extension Study of Treprostinil Palmitil Inhalation Powder (TPIP) for Pulmonary Arterial Hypertension (PAH) — Jacksonville, Florida
- A Clinical Study of to Confirm the Doses of Selexipag in Children With Pulmonary Arterial Hypertension — Aurora, Colorado
- ADAPT - A Patient Registry of the Real-world Use of Orenitram® — Fresno, California
Explore by condition: All Pulmonary Arterial Hypertension clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.