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Chronic Thromboembolic Disease Registry

Chronic Thromboembolic Disease: A Prospective Registry

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
18 Years and older
Sex
All sexes
Healthy volunteers
Not accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

  • Procedures mentioned: Questionnaires

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "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."
Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This registry follows adults with long-lasting blood clots in the lungs, with or without high blood pressure in the lung arteries. It looks at long-term health after medicines, a balloon procedure, or surgery, and how treatment affects daily life and ability to exercise. Researchers use medical records and health surveys to follow patients over time.

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.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • Age 18 or older.
  • Referred for long-lasting blood clots in the lungs, with or without high blood pressure in the lung arteries.
  • Have high pressure and resistance to blood flow in the lung arteries at rest, or trouble exercising because of long-lasting lung clots without high lung blood pressure at rest.
  • Have imaging scans that show long-lasting blood clots in the lungs.
  • Have trouble exercising after a blood clot and signs of lasting lung clots if lung blood pressure is not high at rest.
  • Have taken blood thinners for at least 3 months before diagnosis.

Who can't join

  • High blood pressure in the lung arteries is mainly caused by something other than long-lasting blood clots.
  • Do not want to join clinical research or receive a treatment or procedure.

Simplified for readability. The official criteria below are what the study team uses.

Official 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

Study sites (1)

CA