A Registry for the Scientific Study of Pulmonary Hypertension in the United States


About this study

The purpose of this study is to identify, characterize, and study a group of patients who have pulmonary hypertension, newly diagnosed in the current treatment era, when investigators can use the contributions of genomics and clinical imaging tests to further understand the disease. This registry should advance knowledge in the field both from a molecular (genomic and proteomic) and from a clinical phenotype standpoint.

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

  • Diagnosis of WHO Group I PAH (< 6 months) including the following subgroups
    • Pulmonary Arterial Hypertension (PAH)
      • Idiopathic PAH
      • Heritable PAH
        • BMPR2
        • ALK-1, ENG,SMAD9, CAV1, KCNK3
        • Unknown
      •  Drug and toxin induced
      • Associated with
        • Connective tissue disease
        • HIV infection
        • Portal hypertension
        • Congenital systemic to pulmonary shunts
    • Primary pulmonary veno-occlusive disease and/or pulmonary capillary hemangiomatosis
  • Documentation of the following hemodynamic parameters by pulmonary artery catheterization
    • Mean pulmonary arterial pressure (PAPm) ≥ 25 mm Hg at rest
    • Pulmonary artery wedge pressure (PAWP) or left ventricular end diastolic pressure (LVEDP) ≤ 15 mm Hg in the absence of mitral stenosis
    • Pulmonary vascular resistance (PVR) > 3 Wood Units
  • Patient has consented to participate in the NHLBI sponsored R24HL105333 National Biological Sample and Data Repository for PAH

Exclusion Criteria

  • Unwilling or unable to provide written consent for participation in the study
  • Has an underlying medical disorder (e.g. metastatic cancer) with an anticipated life expectancy less than 2 years
  • Does not meet inclusion criteria including
    • No documentation of hemodynamic criteria by pulmonary artery catheterization as outlined in the inclusion criteria
    • Meets the criteria for inclusion into WHO Diagnostic Groups II, III, IV 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

Jacksonville, Fla.

Mayo Clinic principal investigator

Charles Burger, M.D.

Closed for enrollment

More information


Publications are currently not available

Additional contact information

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Phone: 800-664-4542 (toll-free)

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