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Registry for patients with pulmonary hypertension

Pulmonary Hypertension Association Registry

Observational Pulmonary Hypertension Association, Inc. · NCT04071327

This study collects information from people with pulmonary hypertension to see how they are diagnosed and treated, and to find ways to improve their care.

Quick facts

Study typeObservational
Enrollment3000 (estimated)
Ages0 Years and up
SexAll
SponsorPulmonary Hypertension Association, Inc. Academic / other
Locations52 sites (Phoenix, Arizona and 51 other locations)
Trial IDNCT04071327 on ClinicalTrials.gov

What this trial studies

The PHA Registry collects data from individuals diagnosed with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) across accredited care centers in the U.S. This observational study aims to evaluate how these patients are diagnosed, treated, and monitored, while also assessing their health outcomes. By gathering comprehensive information on clinical status, treatment regimens, and socioeconomic factors, the registry seeks to identify trends and factors that influence patient outcomes. The ultimate goal is to ensure that treatment aligns with established guidelines and to improve care for those affected by pulmonary hypertension.

Who should consider this trial

Good fit: Ideal candidates include individuals of all ages diagnosed with PAH or CTEPH who are within six months of their first outpatient visit at a participating care center.

Not a fit: Patients with other forms of pulmonary hypertension, such as WSPH Group 2, Group 3 (except due to developmental lung disease), or Group 5, may not benefit from this study.

Why it matters

Potential benefit: If successful, this registry could enhance the understanding of pulmonary hypertension management and lead to improved treatment strategies for patients.

How similar studies have performed: Other observational studies in similar areas have shown success in improving patient outcomes and treatment adherence, indicating that this approach is both valuable and tested.

Eligibility criteria

Show full inclusion / exclusion 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

Where this trial is running

Phoenix, Arizona and 51 other locations

+2 more sites — see ClinicalTrials.gov for the full list.

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions Pulmonary Arterial HypertensionChronic Thromboembolic Pulmonary HypertensionPulmonary Hypertension
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.