Chronic Thromboembolic Disease Registry

Launched by UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · Apr 24, 2023

Keywords

ClinConnect Summary

The Chronic Thromboembolic Disease Registry is a study designed to learn more about patients with chronic thromboembolic disease (CTD) and chronic thromboembolic pulmonary hypertension (CTEPH). The main goals of this trial are to understand how different treatments—like medications, a procedure called balloon pulmonary angioplasty, and surgery known as pulmonary endarterectomy—affect long-term health, quality of life, and exercise ability in patients with these conditions. Researchers will follow participants over time to gather information through health records and surveys about their experiences and outcomes.

To be eligible for this study, participants must be at least 18 years old and have been diagnosed with CTD or CTEPH. This includes people who have specific measurements in their lungs that suggest these conditions and who have had treatment with blood thinners for at least three months prior to their diagnosis. It's important to note that individuals with other causes of pulmonary hypertension are not eligible, and participation is voluntary. Those who join the study can expect regular check-ins to assess their health and quality of life, contributing valuable information that could improve future treatments for others with similar conditions.

Gender

ALL

Eligibility 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