 NEW
YORK Albany
Steffens Scleroderma Center
1367 Washington Avenue, Suite 101, Albany, New York
12206
www.steffens-scleroderma.org
Clinic Information:
Adolescent and adult patients with localized or systemic
scleroderma
Hours: Tuesday 8:30 a.m.–noon and Wednesday
12:30–4 p.m.
New Patient Referrals and Appointments:
Appointments are available in either the Albany or Saratoga office:
Please direct all requests for appointments to:
Margo Lo Presti
New Patient Coordinator
6 Care Lane, Saratoga Springs NY 12866
Phone: 518-584-4953
Direct Fax: 518-533-1369
mlopresti@joint-docs.com
Please note: As a specialty provider, it is important for us to have a copy of any recent office notes, lab reports, radiological reports, including x-ray, bone density, MRI and/or bone scans. Please call your referring physician and request a copy of your records be faxed or mailed to us. Please confirm that we have received them prior to your appointment. Thank you.
Physician Inquiries: (518) 533-1311
Research Information:
Please direct all questions regarding current research, trials, studies and other topics related to ongoing research to:
Sharyn Freitas
Clinical Research Coordinator
phone: 518-584-4953 ext 402
fax: 518- 584-7916
sharyn.freitas@acphs.edu
| Studies |
Status |
| PHAROS (Observational Study of Natural
History of Pulmonary Hypertension) |
Active |
| SCOT Study (Scleroderma Cyclophosohamide
Or Transplantation) |
Active |
| Topical Therapy for Raynaud’s |
Closed |
| Digital Ulcer Study |
Closed |
| DETECT Study (Pulmonary Hypertension diagnosis |
Active |
Physicians Affiliated with this Center:
Lee Shapiro, M.D.
* * * * * *
* * *
 NEW
YORK New York City
Hospital for Special Surgery, 535 East 70 Street, New York, NY phone/fax: 212-774-2048/ 212-774-2358
http://www.hss.edu
Clinic Information:
Adult, adolescent and pediatric patients seen with systemic and localized scleroderma
Hours: Monday – Friday, 9am- 5pm
Appointments: Elizabeth Soto- Cardona, 212-606-1173
Physician Inquiries: Dr. Robert Spiera 212-774-2048, Dr. Jessica Gordon 212-606-1173
Research Information: Kamini Doobay 212-774-7194, Morgana Davids 212-774-2123
| Studies |
Status |
| DISTOL-1: Digital ischemic lesions in scleroderma treated with oral treprostinil diethanolamine: a randomized, double-blind, placebo controlled, multicenter study. |
Active recruiting |
| DISTOL-EXT: Digital ischemic lesions in scleroderma treated wtih oral treprostinil diethanolamine: an open-label extension study (no placebo). |
Active |
| DASATINIB: An open label trial to evaluate the safety of dasatinib in the treatment of scleroderma pulmonary interstitial fibrosis. |
Active |
| NILOTINIB: A trial to assess the safety and tolerability of nilotinib, a tyrosine kinase inhibitor already FDA approved for the treatment of CML, in the treatment of diffuse systemic sclerosis. |
Active recruiting |
| GLEEVEC in the Treatment of Systemic Sclerosis: A trial to determine the safety and tolerability of a medication called Gleevec in systemic sclerosis. |
Active |
| GLEEVEC in the Treatment of Systemic Sclerosis- Extension Phase: A study to provide patients the opportunity to continue imatinib (Gleevec) treatment after completing the phase IIa clinical trial of imatinib treatment at the Hospital for Special Surgery with ongoing assessments of safety and efficacy. |
Active |
| PHAROS: Pulmonary Hypertension Assessment Registry of Scleroderma. A prospective observational longitudinal cohort study of patients with scleroderma who are at high risk for pulmonary hypertension. |
Active recruiting |
| SCLERODERMA REGISTRY: A prospective, observational, longitudinal database that will store clinical information and biological materials to facilitate basic scientific research and clinical studies of patients with scleroderma.. |
Active recruiting |
Physicians Affiliated with this Center:
- Dr. Robert F. Spiera
- Dr. Jessica Gordon
* * * * * * * * *
 NEW
YORK Stony Brook
Stony Brook University Hospital, Risk Reduction and
Disease Management Center, 26 Research Way, East Setauket,
NY 11733
Clinic Information:
Adult and pediatric patients with localized or systemic
scleroderma, overlap and mixed connective tissue disease
syndromes
Hours:
Monday–Friday 9 a.m.–5 p.m.
Appointments:
(631) 444-0580
Physician Inquiries:
(631) 444-0580, then follow prompts
Research Information:
Jacqueline Skarre, R.N. (631) 444-9033
| Studies |
Status |
| Topical Gel Formulation for Treatment of Raynaud's |
Open |
Physician Affiliated with this Center:
- Dr. Mirza
- Heidi J. Roppelt, M.D.
|
