An observational study in Chronic Thromboembolic Pulmonary Hypertension and CTEPH, sponsored by International CTEPH Association. Active, not recruiting at 25 sites in 20 countries. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2025-05-08.
Sponsored by International CTEPH Association · Observational
The goal of this observational patient registry is to learn how expert centers treat patients with chronic thromboembolic pulmonary hypertension (CTEPH). CTEPH is a condition in which blood clots block the blood vessels in the lungs. There are currently three treatment options for patients with CTEPH:
Patients can also receive a combination of these treatments.
The main question this registry aims to answer are:
Participants will receive the same treatments that they would receive if they did not participate in the study. During the study, patients will visit their doctors as they would do normally. The doctors will collect information on the patients' health and enter it into the study database. The follow-up time will be at least 3 years for all patients.
1,105 studies on the registry are indexed under Hypertension, Pulmonary; 234 are open to participants now.
This study's planned enrollment of 1,000 is above the median of 116 across 386 observational studies indexed under Hypertension, Pulmonary.
Browse Hypertension, Pulmonary studies →International CTEPH Association is the lead sponsor of 4 studies on the registry; none are open to participants now.
Counted across the registry records on this site, refreshed daily.
Patients suffering from CTEPH or CTEPD without PH who are newly referred to an expert center and who meet all of the inclusion criteria and none of the exclusion criteria
Newly referred patient with CTEPH or chronic thromboembolic pulmonary disease (CTEPD) without PH according to the following criteria:
Exclusion Criteria:
Surgical removal of a chronic clot from the pulmonary artery
Also known as: PEA, Pulmonary thromboendarterectomy (PTE), PTE
Catheter-based intervention to dilate occluded pulmonary vessels through the insertion and inflation of a small balloon
Also known as: BPA
Treatment with any PH-specific medication, i.e. endothelin receptor antagonists, phosphodiesterase type 5 inhibitors, soluble guanylate cyclase stimulators, drugs acting on the prostanoid pathway and prostaglandin I2 receptor agonists
Utilization and combination of treatment modalities
Proportion of patients undergoing a certain type of treatment modality, or a certain combination of modalities
Time frame: Min. 3 years
3-year survival
Proportion of patients alive 3 years after the last intervention recorded in the registry, or after start of medical treatment for patients not undergoing any interventional treatment
Time frame: 3 years after last intervention
Complications of treatment interventions (per patient)
Proportion of patients experiencing complications from BPA or PEA
Time frame: Min. 3 years
Complications of treatment interventions (per BPA session)
Proportion of BPA sessions associated with complications
Time frame: Min. 3 years
1-year survival
Proportion of patients alive 1 year after the last intervention recorded in the registry, or after start of medical treatment for patients not undergoing any interventional treatment
Time frame: 1 year after last intervention
5-year survival
Proportion of patients alive 5 years after the last intervention recorded in the registry, or after start of medical treatment for patients not undergoing any interventional treatment
Time frame: 5 year after last intervention
Changes in PH-specific medication
Proportion of patients experiencing a change in PH-specific medication during the study
Time frame: Min. 3 years
Reason why PEA was not performed
The main reason why PEA was not performed as chosen by the investigator from a list of pre-defined reasons
Time frame: Min. 3 years
Reason why BPA was not performed
The main reason why BPA was not performed as chosen by the investigator from a list of pre-defined reasons
Time frame: Min. 3 years
Number of unplanned hospitalizations
Proportion of patients experiencing an unplanned hospitalization (i.e. not considering planned hospitalizations for study procedures such as PEA or BPA)
Time frame: Min. 3 years
Timing of unplanned hospitalizations
Analysis of the timing of unplanned hospitalization for patients experiencing an unplanned hospitalization (i.e. not considering planned hospitalizations for study procedures such as PEA or BPA)
Time frame: Min. 3 years
Frequency of QoL assessment
Proportion of patients undergoing QoL assessment by means of a validated questionnaire during the study
Time frame: Min. 3 years
Type of QoL questionnaire
Proportion of patients undergoing QoL assessment using a certain validated questionnaire during the study
Time frame: Min. 3 years
This study is active, not recruiting, as verified in May 2025. You cannot join it, but the record below documents what was studied.
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International CTEPH Association