Chronic Thromboembolic Disease Registry
This study is a registry for people with chronic thromboembolic disease (CTD) or chronic thromboembolic pulmonary hypertension (CTEPH). Researchers want to understand how these conditions progress over time and how different treatments affect patients' health and quality of life. This includes looking at outcomes after medical treatments, balloon pulmonary angioplasty, and pulmonary endarterectomy. You may be able to join if you are 18 or older and have been diagnosed with CTED or CTEPH, which involves specific measurements of pressure in your lungs. The study will track how many patients survive and changes in exercise tolerance and oxygen use over an average of five years.
- Study design
- This is an observational study, meaning researchers will collect information without giving new treatments. It aims to include 100 participants.
- What's involved
- Participants will be followed over time, and their health outcomes and quality of life will be assessed through chart reviews and health quality surveys.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be followed for an average of five years to assess survival, exercise tolerance, and supplemental oxygen use.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Chronic Thromboembolic Disease Registry
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Miles Conrad, MD · PRINCIPAL_INVESTIGATOR · University of California, San Francisco
Who to contact
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Do you actually qualify for this trial?
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Inclusion
Exclusion
What this trial measures
- Total number of patients who surviveThrough study completion, an average of 5 years
The total number of patients who are alive
- Changes in exercise toleranceBaseline to end of the study, an average of 5 years
Measured by 6-min walk test, which will be done approximately every 3 months at follow up per standard of care
- Changes in supplemental oxygen use severityBaseline to end of the study, an average of 5 years
Number of patients on supplemental oxygen, which will be recorded approximately every 3 months at follow up per standard of care. This will be compiled at the end of the study to provide overall change in measurement.
- Changes in New York Heart Association (NYHA) functional classBaseline to end of the study, an average of 5 years
Grading of patients by NYHA functional class, which include functional capacity and objective assessment. This will be compiled at the end of the study to provide overall change in measurement.
- European Quality of Life Five Dimension (EQ-5D) - Scale ScoreBaseline to end of the study, an average of 5 years
Assessment of quality of life will be measured using EQ-5D-5L. This instrument is a self-assessed, health-related, quality of life questionnaire that measures quality of life on a 5-component scale. The scores range from Level 1 to Level 5, with lower scores indicating a higher quality of life. This will be collected every 3 months and compiled at the end of the study to provide overall change in measurement.
- Changes in patients' emPHasis-10 scoresBaseline to end of the study, an average of 5 years
Assessed by the emPHasis-10 (pulmonary hypertension) instrument, which is an instrument specifically designed to assess the quality of life in patients with pulmonary hypertension. Each item will be scored from 0 to 5 where 0 was the best score. This will be collected every 3 months and compiled at the end of the study to assess overall change in measurement.
- Number of patients undergoing lung transplantationBaseline to end of the study, an average of 5 years
Number of patients undergoing lung transplantation