Registry for patients with pulmonary hypertension

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• Arizona Pulmonary Specialists, Ltd.
  Phoenix, Arizona, United States Recruiting
• UC Davis Health
  Sacramento, California, United States Recruiting
• UCSF Medical Center
  San Francisco, California, United States Recruiting
• UCSF Benioff Children's Hospital
  San Francisco, California, United States Recruiting
• Cottage Health System - Santa Barbara Pulmonary Associates
  Santa Barbara, California, United States Recruiting
• Stanford University
  Stanford, California, United States Recruiting

+2 more sites. See ClinicalTrials.gov for the full list.

Study contacts

• Study coordinator: Elizabeth Joseloff, PhD
• Email: PHAR@PHAssociation.org
• Phone: 301-565-3004

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Registry and biorepository for pulmonary hypertension patients

  This study is setting up a collection of health information and blood samples from people with pulmonary hypertension to help researchers learn more about the disease and improve treatments.

  Recruiting University of Kansas Medical Center · Kansas City, Kansas · NCT04808596

• Rutgers Genetics of Pulmonary Hypertension

  This online project will try to see if genetic differences affect the risk of pulmonary hypertension in U.S. adults, and anyone 18 or older can join whether or not they have PH.

  Recruiting Rutgers, The State University of New Jersey · Piscataway, New Jersey · NCT07217522

• Quality control of right heart catheterization for pulmonary vascular diseases in China

  This study looks at the quality of right heart catheterization procedures for people with suspected pulmonary hypertension in China to see how well they are being done and what outcomes patients experience.

  Recruiting China-Japan Friendship Hospital · Beijing · NCT06954727

• 129Xe MRI to monitor sotatercept treatment in pulmonary arterial hypertension

  This will test whether hyperpolarized 129Xe MRI scans can noninvasively track lung blood-vessel improvement in adults with pulmonary arterial hypertension treated with sotatercept.

  Recruiting Phase 2 Duke University · Durham, North Carolina · NCT06351345

• Using artificial intelligence to evaluate pulmonary hypertension

  This study is testing if using artificial intelligence with different medical tests can help doctors find pulmonary hypertension earlier and more accurately in patients.

  Recruiting Chinese Pulmonary Vascular Disease Research Group · Beijing, Beijing Municipality · NCT05566002

• Using Xenon MRI to study pulmonary hypertension

  This study is testing if a special type of MRI can help understand how lung changes in people with pulmonary arterial hypertension affect their breathing and overall health.

  Recruiting Phase 2 Duke University · Durham, North Carolina · NCT04991454

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.