Registry for patients with chronic thromboembolic disease

Chronic Thromboembolic Disease: A Prospective Registry

Observational University of California, San Francisco · NCT05843500

This study is collecting information from patients with chronic thromboembolic disease to see how different treatments affect their health and quality of life over time.

Quick facts

Study typeObservational
Enrollment100 (estimated)
Ages18 Years and up
SexAll
SponsorUniversity of California, San Francisco Academic / other
Locations1 site (San Francisco, California)
Trial IDNCT05843500 on ClinicalTrials.gov

What this trial studies

This observational registry aims to gather data on the natural history of patients diagnosed with chronic thromboembolic disease (CTD) and chronic thromboembolic pulmonary hypertension (CTEPH). It will assess long-term outcomes following various treatments, including medication, balloon pulmonary angioplasty, and pulmonary endarterectomy. Participants will be followed over time to evaluate their health outcomes and quality of life through chart reviews and health quality surveys.

Who should consider this trial

Good fit: Ideal candidates include adults aged 18 and older diagnosed with chronic thromboembolic disease or chronic thromboembolic pulmonary hypertension.

Not a fit: Patients with pulmonary hypertension from causes other than chronic thromboembolic disease may not benefit from this registry.

Why it matters

Potential benefit: If successful, this registry could provide valuable insights into treatment effectiveness and improve management strategies for patients with chronic thromboembolic disease.

How similar studies have performed: Other studies have shown success in understanding chronic thromboembolic disease through registries, indicating that this approach is both valuable and tested.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Patients referred with CTED and/or CTEPH defined as:

  1. Mean pulmonary arterial pressure (mPAP) \> 20 mmHg at rest with pulmonary vascular resistance (PVR) \> 2 Wood units (WU); or if mPAP ≤ 20 mmHg or PVR ≤ 2 WU at rest, have exercise limitations from chronic thromboembolic pulmonary disease (CTEPD) without pulmonary hypertension (PH)
  2. Radiologic finding of chronic thromboembolic disease, including abnormal ventilation perfusion scan, pulmonary angiogram, computer tomographic pulmonary angiogram, or magnetic resonance pulmonary angiogram
  3. Post-embolic exercise intolerance and evidence of chronic thromboembolic disease in the absence of resting pulmonary hypertension
* Treatment with anticoagulation for ≥ 3 months before diagnosis of CTEPH or CTEPD without PH
* Age ≥ 18 years

Exclusion Criteria:

* Main cause of PH other than World Health Organization (WHO) group 4 (CTEPH)
* Patient's refusal to participate in clinical research and/or receive intervention

Where this trial is running

San Francisco, California

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.
Conditions Chronic Thromboembolic Pulmonary HypertensionChronic Thromboembolic Disease
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.