Recruiting

Chronic Thromboembolic Disease Registry

The goal of this patient registry is to learn about the natural history in patients with chronic thromboembolic disease (CTD) and/or chronic thromboembolic pulmonary hypertension (CTEPH). The main question\[s\] it aims to answer are: * Long-term outcome after various types of treatment, including medication, balloon pulmonary angioplasty, and pulmonary endarterectomy * Effect of treatment on patient's quality of life and exercise tolerance Participants will be followed longitudinally to assess their health…

ClinicalTrials.gov IDNCT05843500

PhaseNot Applicable

Enrollment100

SponsorUniversity of California, San Francisco

Age18 Years

SexALL

I'm interested View official listing

Conditions studied

Chronic Thromboembolic Pulmonary Hypertension, Chronic Thromboembolic Disease

About this study

Interventions

Other: Survey — Patients who received medical, surgical or interventional treatment for chronic thromboembolic pulmonary hypertension will be followed and given quality of life questionnaires.

Primary outcomes

Total number of patients who survive (Through study completion, an average of 5 years)
Changes in exercise tolerance (Baseline to end of the study, an average of 5 years)
Changes in supplemental oxygen use severity (Baseline to end of the study, an average of 5 years)
Changes in New York Heart Association (NYHA) functional class (Baseline to end of the study, an average of 5 years)
European Quality of Life Five Dimension (EQ-5D) - Scale Score (Baseline to end of the study, an average of 5 years)
Changes in patients' emPHasis-10 scores (Baseline to end of the study, an average of 5 years)
Number of patients undergoing lung transplantation (Baseline to end of the study, an average of 5 years)

Eligibility information

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

Study locations

University of California San Francisco, San Francisco, California 94143 United States

Before you participate: Varda Clinical is an independent discovery tool, not the study sponsor or a medical provider. Eligibility can only be determined by the official study team. Discuss potential risks and benefits with a qualified healthcare professional.

Source: ClinicalTrials.gov. Record last refreshed by Varda Clinical: 2026-09-27.