A Registry for United States Patients with Chronic Thromboembolic Pulmonary Hypertension


About this study

The purpose of this registry will be to promote a greater understanding of the prevalence, pathophysiology, evaluation, and treatment of United States patients with chronic thromboembolic pulmonary hypertension through shared information, education, and collaborative investigation among pulmonary hypertension centers throughout the U.S.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria

  • Must be a permanent resident of the United States
  • Has documentation of the following hemodynamic parameters by right heart catheterization
    • Mean pulmonary arterial pressure (PAPm) ≥ 25 mm Hg at rest
    • Pulmonary artery wedge pressure (PAWP) ≤ 15 mm Hg (or > 15 mmHg if justified)
  • Radiologic confirmation that chronic thromboembolic disease is the cause of the pulmonary hypertension by
    • One or more mismatched perfusion defect(s) by lung ventilation/perfusion scan and
    • Confirmation of chronic thromboembolic disease by evidence of bands/webs, vessel narrowing or occlusion seen on CT pulmonary angiogram (CTA), conventional angiography or MR angiography (MRA)
  • Must be diagnosed with chronic thromboembolic pulmonary hypertension within 6 months of being considered for study eligibility (signing of consent to participate)
    • Date of diagnosis will be defined as when both hemodynamic criteria have been met and chronic thromboembolic disease is confirmed to be the cause of the pulmonary hypertension by an abnormal V/Q scan and the presence of chronic thromboembolic disease on CTA, MRA or pulmonary angiography
    • Hemodynamic and radiologic criteria can be met at separate time points
    • The most recently met criteria time point will be defined as the date of diagnosis.
  • Prior to enrollment all subjects must have the diagnosis of CTEPH confirmed by the Adjudication Committee


Exclusion Criteria

  • Unwilling or unable to provide written consent for participation in the study
    • Appropriate surrogate consent will be obtained for pediatric patients as defined by each investigational site's IRB
  • An underlying medical disorder with an anticipated life expectancy less than 2 years
  • Do not meet inclusion criteria including
    • Have not had documentation of hemodynamic criteria by right heart catheterization as outlined in the inclusion criteria
    • Do not have radiologic confirmation of chronic thromboembolic disease as outlined in the inclusion criteria
    • Meet the criteria for inclusion into WHO Groups I, II, III, or V

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status

Rochester, Minn.

Mayo Clinic principal investigator

Michael Krowka, M.D.

Closed for enrollment

More information


Publications are currently not available

Study Results Summary

Not yet available

Supplemental Study Information

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