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Massive U.S. registry aims to unlock secrets of pulmonary hypertension care

NCT ID NCT04071327

Knowledge-focused Sponsor: Pulmonary Hypertension Association, Inc. Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study is a national registry that collects information from 3,000 people with pulmonary hypertension (PH) treated at specialized centers across the U.S. Researchers will track how patients are diagnosed, treated, and how they do over time. The goal is to see if care follows recommended guidelines and identify factors that lead to better or worse outcomes.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 3,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Oct 2015

Expected to finish

Dec 2025

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

New patients to a PHA-accredited PH Care Center (PHCC) with either newly diagnosed or established 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 the PHCC.

Ages

0 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

chronic thromboembolic pulmonary hypertension pulmonary arterial hypertension pulmonary hypertension pulmonary hypertension owing to lung disease and/or hypoxia

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Chronic thromboembolic pulmonary hypertension Pulmonary arterial hypertension Pulmonary hypertension

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    52 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Allegheny General Hospital

    RECRUITING

    Pittsburgh, Pennsylvania, 15212, United States

  • AnMed Health

    RECRUITING

    Anderson, South Carolina, 29621, United States

  • Arizona Pulmonary Specialists, Ltd.

    RECRUITING

    Phoenix, Arizona, 85012, United States

  • Aurora St. Luke's Medical Center

    RECRUITING

    Milwaukee, Wisconsin, 53215, United States

  • Baylor Scott & White

    RECRUITING

    Plano, Texas, 75093, United States

  • Children's Hospital Colorado

    RECRUITING

    Aurora, Colorado, 80045, United States

  • Cincinnati Children's Hospital

    RECRUITING

    Cincinnati, Ohio, 45229, United States

  • Columbia University Medical Center/NewYork-Presbyterian Hospital

    RECRUITING

    New York, New York, 10032, United States

  • Cottage Health System - Santa Barbara Pulmonary Associates

    RECRUITING

    Santa Barbara, California, 93105, United States

  • Duke University Medical Center

    RECRUITING

    Durham, North Carolina, 27710, United States

  • Froedtert & Medical College of Wisconsin

    RECRUITING

    Milwaukee, Wisconsin, 53226, United States

  • Ft. Sanders Regional Medical Center

    RECRUITING

    Knoxville, Tennessee, 37916, United States

  • Henry Ford Hospital

    RECRUITING

    Detroit, Michigan, 48202, United States

  • Indiana University Health

    NOT_YET_RECRUITING

    Indianapolis, Indiana, 46202, United States

  • Inova Fairfax Hospital

    RECRUITING

    Falls Church, Virginia, 22042, United States

  • Johns Hopkins University

    RECRUITING

    Baltimore, Maryland, 21287, United States

  • KU Medical Center

    RECRUITING

    Kansas City, Kansas, 66160, United States

  • Kentuckiana Pulmonary Associates

    RECRUITING

    Louisville, Kentucky, 40202, United States

  • LSU Healthcare Network Clinic

    RECRUITING

    New Orleans, Louisiana, 70115, United States

  • Mayo Clinic

    RECRUITING

    Rochester, Minnesota, 55905, United States

  • Mayo Clinic Florida

    RECRUITING

    Jacksonville, Florida, 32224, United States

  • Northside Hospital

    RECRUITING

    Atlanta, Georgia, 30342, United States

  • Ochsner Medical Center

    RECRUITING

    Jefferson, Louisiana, 70121, United States

  • Rhode Island Hospital

    RECRUITING

    Providence, Rhode Island, 02903, United States

  • Seattle Children's Hospital

    RECRUITING

    Seattle, Washington, 98105, United States

  • Sentara Heart Hospital

    RECRUITING

    Norfolk, Virginia, 23507, United States

  • Stanford University

    RECRUITING

    Stanford, California, 94305, United States

  • Texas Children's Hospital

    RECRUITING

    Houston, Texas, 77030, United States

  • The Oregon Clinic

    RECRUITING

    Portland, Oregon, 97225, United States

  • UC Davis Health

    RECRUITING

    Sacramento, California, 95816, United States

  • UC Health

    RECRUITING

    Cincinnati, Ohio, 45267, United States

  • UC Health - Anschutz Medical Campus

    RECRUITING

    Aurora, Colorado, 80045, United States

  • UCSF Benioff Children's Hospital

    RECRUITING

    San Francisco, California, 94158, United States

  • UCSF Medical Center

    RECRUITING

    San Francisco, California, 94143, United States

  • UNC Chapel Hill

    RECRUITING

    Chapel Hill, North Carolina, 27517, United States

  • UT Southwestern Medical Center

    RECRUITING

    Dallas, Texas, 75390, United States

  • University of Connecticut Health

    RECRUITING

    Farmington, Connecticut, 06030, United States

  • University of Iowa Hospitals & Clinic

    RECRUITING

    Iowa City, Iowa, 52242, United States

  • University of MD Medical Group, PA

    RECRUITING

    Baltimore, Maryland, 21201, United States

  • University of Minnesota Health

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

  • University of Pennsylvania

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • University of Pittsburgh Medical Center

    RECRUITING

    Pittsburgh, Pennsylvania, 15213, United States

  • University of Rochester Medical Center

    RECRUITING

    Rochester, New York, 14642-0001, United States

  • University of Utah Health

    RECRUITING

    Salt Lake City, Utah, 84132, United States

  • University of Virginia

    RECRUITING

    Charlottesville, Virginia, 22908, United States

  • University of Washington

    RECRUITING

    Seattle, Washington, 98195, United States

  • University of Wisconsin Hospital and Clinics

    RECRUITING

    Madison, Wisconsin, 53792, United States

  • VCU Medical Center

    RECRUITING

    Richmond, Virginia, 23298, United States

  • Vanderbilt Children's Hospital

    RECRUITING

    Nashville, Tennessee, 37232, United States

  • Vanderbilt University Medical Center

    RECRUITING

    Nashville, Tennessee, 37232, United States

  • Washington University in St. Louis

    RECRUITING

    St Louis, Missouri, 63110, United States

  • Weill Cornell Medical Center

    RECRUITING

    New York, New York, 10021, United States

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