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US: Pulmonary Hypertension Registry of Scleroderma (PHAROS)
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Overview of PHAROS Registry
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Overview of PHAROS Registry
By Dr. Virginia Steen

pharos 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). SCTC participating centers are:

Connecticut (Storz)
District of Columbia (Washington)
Maryland, Baltimore
New Jersey (New Brunswick)
New York (Albany)
South Carolina (Charleston)
Texas (Houston)
Wisconsin (Milwaukee)

Other centers are planning to participate in:

Arizona
California
Michigan
Pennsylvania
Washington

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.

How to Enroll
pharos Patients are encouraged to contact Dr. Steen at steenv@georgetown.edu if they have pulmonary hypertension and would like to participate in this registry.
Related Links
ISN/SCTC Research Fund. Support research conducted by the Scleroderma Clinical Trials Consortium through this special fund, in conjunction with the nonprofit International Scleroderma Network! ISN.
Pulmonary Hypertension. ISN.
Scleroderma Clinical Trial Consortium (SCTC). SCTC.
Scleroderma Experts. ISN.
Scleroderma Research Registries. ISN.
What is Scleroderma? ISN.
Page Notes
This page was posted 04-10-06 at the request of Dr. Virginia Steen. SLE.
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