| Scleroderma Research Registries (MAIN MENU) | ||
| ||
| US: Pulmonary Hypertension Registry of Scleroderma (PHAROS) | ||
| For Systemic Scleroderma (SSc) Patients in the U.S. | ||
| ||
| Overview of Research Registries | ||
| Join as many research registries as you possibly can! | ||
| 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. | ||
| Overview of PHAROS Registry | ||
| By Dr. Virginia Steen | ||
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:
Other centers are planning to participate in: 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 | ||
| 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. | ||
| The PHAROS Registry is a member of the Scleroderma Webmaster's Association | ||
 |
| Go to UK Scleroderma Registry | ||||||||||||
|
||||||||||||