Registry for patients with chronic thromboembolic disease

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational registry aims to gather data on the natural history of patients diagnosed with chronic thromboembolic disease (CTD) and chronic thromboembolic pulmonary hypertension (CTEPH). It will assess long-term outcomes following various treatments, including medication, balloon pulmonary angioplasty, and pulmonary endarterectomy. Participants will be followed over time to evaluate their health outcomes and quality of life through chart reviews and health quality surveys.

Why it matters

Who can join: the full rules

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

Where it's running

• University of California San Francisco
  San Francisco, California, United States Recruiting

Study contacts

• Principal investigator: Miles Conrad, MD — University of California, San Francisco
• Study coordinator: Miles Conrad, MD
• Email: miles.conrad@ucsf.edu
• Phone: (415) 353-1300

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Pulmonary Embolism Registry from Emergency Care to Long-Term Follow-Up

  This registry follows adults with acute pulmonary embolism to see how care is given in the real world and what happens over time.

  Recruiting at 16 sites Azienda Ospedaliero-Universitaria Careggi · Bagno a Ripoli, Tuscany and 15 other locations · NCT07855679

• Nailfold Capillaroscopy in Pulmonary Hypertension

  This study tests whether nailfold capillary scans correlate with invasive lung blood pressure measurements and whether these patterns change with PH treatment.

  Recruiting University of Glasgow · Clydebank, West Dunbartonshire · NCT07768644

• How pulmonary endarterectomy affects confidence in managing chronic thromboembolic pulmonary hypertension

  This project will see if pulmonary endarterectomy helps people with chronic thromboembolic pulmonary hypertension feel more confident managing their condition.

  Recruiting Damascus University · Damascus, Rif-dimashq Governorate · NCT07272798

• Registry of people with chronic thromboembolic pulmonary hypertension in Russia

  This registry collects health, history, and treatment information from people in Russia with chronic thromboembolic pulmonary hypertension to see which factors relate to their prognosis.

  Recruiting National Medical Research Center for Cardiology, Ministry of Health of Russian Federation · Moscow · NCT07254078

• Effects of stopping riociguat on heart function in patients with CTEPH

  This study is testing how stopping the medication riociguat affects heart function in patients with inoperable CTEPH who have had balloon pulmonary angioplasty.

  Recruiting at 3 sites Phase 3 Beijing Chao Yang Hospital · Beijing, China and 2 other locations · NCT06922240

• Switching from Sildenafil to Riociguat for CTEPH Patients

  This study is testing if switching from sildenafil to riociguat can help people with Chronic Thromboembolic Pulmonary Hypertension feel better after they’ve already had balloon pulmonary angioplasty.

  Recruiting Phase 4 Chinese University of Hong Kong · Hong Kong · NCT06715280

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.