|How to Enroll
You may join all of the research registries and quality of life studies that you are eligible for. It's not like clinical trials, where you are limited to just one. (Also see Scleroderma Research Registries)
I would like to tell you about a very important registy that members of the Scleroderma Clinical Trial Consortium (SCTC) are doing.
PHAROS: Pulmonary Hypertension Registry of Scleroderma, is a multicenter study of systemic scleroderma (systemic sclerosis) patients in the United States who are at high risk for developing pulmonary hypertension as well as those with newly diagnosed with pulmonary hypertension.
This is being coordinated by Dr. Virginia Steen at Georgetown University (in Washington, DC).
This is an extremely important study since pulmonary hypertension (PAH) is the most common cause of scleroderma deaths. It is looking specifically at patients who are at high risk for PAH, those who have specific abnormalities on pulmonary function tests (PFTs) or echocardiograms (ECGs) as well as those who are newly diagnosed with PAH.
Patients only need to see the study investigator yearly and they fill out questionnaires twice a year.
Association between Initial Oral Therapy and Outcomes in Systemic Sclerosis-related Pulmonary Arterial Hypertension (SSc-PAH): Observations from PHAROS. Compared to phosphodiesterase-5 inhibitor (PDE5i) or combination endothelin-receptor antagonist (ERA)/PDE5i, initial therapy with an ERA in SSc-PAH patients was associated with a significantly worse time to clinical worsening. PubMed, Arthritis Rheumatol, 10/19/2015.
Development of pulmonary hypertension (PH) in a high risk population with systemic sclerosis in the Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma (PHAROS) cohort study. A low DLco, high FVC/DLco, exercise-induced hypoxia and entry echo sPAP 40 were strongly associated with future PH. Seminars in Arthritis and Rheumatism, 03/07/2014. (Also see Pulmonary Hypertension Diagnosis)
Patients are encouraged to contact Dr. Steen at [email protected] if they have pulmonary hypertension and would like to participate in this registry.
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This page was first posted 04-10-06 at the request of Dr. Virginia Steen. SLE.
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