United States Pulmonary Hypertension Scientific Registry (USPHSR)

Overview

About this study

The purpose of the United States Pulmonary Hypertension Scientific Registry (USPHSR) will be to promote a greater understanding of PAH in an era of genetic discoveries, the study of the physical make up of individual people, and new treatments through education and collaborative assessment of information among pulmonary hypertension (PH) centers throughout the U.S. The development of a national USPHSR Registry will be an important element for advancement of the understanding of PAH and improvement of the care of patients who suffer from this life threatening disorder.

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

Prior to enrollment in the Registry, candidates must meet the following inclusion criteria:

  • Diagnosis of WHO Group I PAH (< 6 months) including the following subgroups:

1. Pulmonary Arterial Hypertension (PAH)

  1. Idiopathic PAH
  2. Heritable PAH
    1. ALK-1, ENG,SMAD9CAV1KCNK3
    2. Drug and toxin induced Associated With:
      1. Connective tissue disease
      2. HIV infection
      3. Portal hypertension
      4. Congenital systemic to pulmonary shunts
     1’ 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 and,
    • Pulmonary artery wedge pressure (PAWP) or left ventricular end diastolic pressure (LVEDP) ≤ 15 mm Hg in the absence of mitral stenosis and,
    • 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
                Patients not eligible for enrollment include:
    • Patients unwilling or unable to provide written consent for participation in the study.
    • Patients with an underlying medical disorder (e.g. metastatic cancer) with an anticipated life expectancy less than 2 years.
    • Patients who do not meet inclusion criteria including:
      • Have not had documentation of hemodynamic criteria by pulmonary artery catheterization as outlined in the inclusion criteria
      • Meet 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

Rochester, Minn.

Mayo Clinic principal investigator

Robert Frantz, M.D.

Closed for enrollment

More information

Publications

Publications are currently not available

Study Results Summary

Not yet available

Supplemental Study Information

Not yet available

Additional contact information

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

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