Registry aims to uncover long-term outlook for rare blood-clot lung disease
NCT ID NCT05843500
First seen Jul 14, 2026 · Last updated Jul 15, 2026 · Updated 1 time
Summary
This study follows people with chronic thromboembolic disease (CTD) or chronic thromboembolic pulmonary hypertension (CTEPH) — conditions where blood clots scar the lungs' blood vessels. Researchers track survival, exercise ability, oxygen use, and quality of life over time using surveys and medical records. The goal is to better understand how different treatments affect long-term outcomes.
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Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 100 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Aug 2023
- Expected to finish
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Jul 2028
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Patients with diagnosed chronic thromboembolic disease (CTED) or chronic thromboembolic pulmonary hypertension (CTEPH)
- Ages
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18 years and older
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
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
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
1 site. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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University of California San Francisco
RECRUITINGSan Francisco, California, 94143, United States
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