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: * surgery to remove blood clots from large vessels in the lungs (pulmonary endarterectomy (PEA)) * the use of a small balloon to unblock smaller blood vessels (balloon pulmonary angioplasty (BPA)) * drugs Patients can also receive a combination of these treatments. The main question this registry aims to answer are: * How many patients receive a given kind of treatment? * How do expert centers combine the different treatments? * Are patients doing better after they receive a given kind of treatment? * How many patients are alive 1, 3 and 5 years after they receive a given kind of treatment? 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.
Study Type
OBSERVATIONAL
Enrollment
1,000
Surgical removal of a chronic clot from the pulmonary artery
Catheter-based intervention to dilate occluded pulmonary vessels through the insertion and inflation of a small balloon
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
University of California San Diego
San Diego, California, United States
Northwestern University
Evanston, Illinois, United States
Duke University
Durham, North Carolina, United States
UT Southwestern
Dallas, Texas, United States
Hospital Universitario Fundación Favaloro
Buenos Aires, Argentina
University Hospital Vienna
Vienna, Austria
University Hospitals Leuven
Leuven, Belgium
Santa Casa
Porto Alegre, Brazil
Toronto General Hospital
Toronto, Ontario, Canada
China-Japan Friendship Hospital
Beijing, China
...and 15 more locations
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
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