Chronic Thromboembolic Disease Registry

University of California San Francisco (UCSF)

Status

Enrolling

Conditions

Chronic Thromboembolic Disease

Chronic Thromboembolic Pulmonary Hypertension

Treatments

Other: Survey

Study type

Observational

Funder types

Other

Identifiers

NCT05843500

23-38534

Details and patient eligibility

About

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 outcomes and quality of life via chart review and health quality surveys.

Enrollment

100 estimated patients

Sex

All

Ages

18+ years old

Volunteers

No Healthy Volunteers

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