United States Pulmonary Hypertension Scientific Registry (USPHSR)

Overview

Información sobre este estudio

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.

Elegibilidad para la participación

Los requisitos de elegibilidad de los participantes incluyen la edad, el sexo, el tipo y el estadio de la enfermedad, y los problemas de salud o tratamientos previos. Las pautas difieren de un estudio a otro e identifican quiénes pueden o no pueden participar. No hay garantía de que cada persona elegible que desee participar en un ensayo se inscribirá. Comunícate con el equipo del estudio para analizar la elegibilidad del estudio y la posible participación.

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

Sedes participantes de Mayo Clinic

Los estatus de los estudios cambian con frecuencia. Comunícate con el equipo del estudio para obtener la información más actualizada acerca de la posibilidad de participar.

Sede de Mayo Clinic Estatus

Rochester, Minn.

Investigador principal de Mayo Clinic

Robert Frantz, M.D.

Cerrado para la inscripción

More information

Publicaciones

Publications are currently not available
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CLS-20304712

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