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.