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Registry of Sarcoidosis Associated Pulmonary Hypertension (RESAPH)

Description

Pulmonary hypertension and resulting elevated right atrial pressure are associated with increased mortality in sarcoidosis patients awaiting lung transplantation. With the advent of new vasodilator drugs effective for pulmonary hypertension, interest has risen in treating pulmonary hypertension due to secondary causes, including sarcoidosis. We propose to develop a multi center registry of sarcoidosis associated pulmonary hypertension (SAPH). With this registry, we will characterize the demographics, clinical course, hemodynamics, pulmonary physiology, and disease management of sarcoidosis associated pulmonary hypertension in the United States. Primary objective is to characterize the demographics, clinical course, hemodynamics, pulmonary physiology, and disease management of sarcoidosis associated pulmonary hypertension on the United States. Secondary objective is (1) Determine what factors are associated with a bad prognosis in patients diagnosed with SAPH (2) Determine if there is a difference in survival in patients treated with different management strategies (3) Determine the role of immunosuppressive therapy in management of SAPH. Endpoints are (1) Progression of disease to death or transplant (2) Hospitalization (3) Institution of new therapy for pulmonary hypertension (4) Six minute walk distance (5) Change in Saint George Respiratory Questionnaire of >4 points. This is an open label registry consisting of two populations of patients with SAPH. One group will be patients with known SAPH who are under care at the study center. The second group will be a prospective study of newly diagnosed cases of SAPH. The goal of the registry will be to include approximately 150 patients in both groups for a total of 300 patients.

Phase

N/A

Inclusion and Exclusion Criteria

  • Patients with sarcoidosis as defined by the ATS/WASOG statement
  • Patients with pulmonary hypertension as confirmed by right heart catheterization
  • Patients willing to provide written informed consent

  • Unwillingness to provide assurance that they will complete the follow up visits for the study

Sites

Please contact Lynn Fukushima to learn more about where you can participate in this trial. Please use the contact form on the right side.

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