Advocates on Steps of Congress 2013
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Alabama

Birmingham

University of Alabama at Birmingham – Rheumatology Clinic
2000 6th Ave., Birmingham, AL 35249
www.health.uab.edu

Phone: (205) 801-8187 (Appointments and information - by referral only)

Clinic Information: The Kirklin Clinic (3rd Floor); 8 a.m. to 5 p.m. Monday through Friday; adult/localized and systemic scleroderma.

Physicians Affiliated with this Center: Barri J. Fessler. M.D.

Clinic contact: Liz Baker, (205) 934-2813, fax (205) 975-6769
Research Information: Sheree Carter, R.N., (205) 934-7754 or toll-free (866) 876-2247

Studies

Status

Treprostinil for Digital Ulcers in Patients with Scleroderma (DISTOL - 1)

Recruiting

Screening Tests in patients with scleroderma

Recruiting

Cardiac MRI in patients with scleroderma

Recruiting

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Arizona

Mayo Clinic Scottsdale ArizonaScottsdale

Mayo Clinic Arizona
13400 E. Shea Blvd., Scottsdale, AZ 85259

Phone: (480) 301-9066
www.mayoclinic.org/rheumatology-sct/

Clinic Information: Mayo Clinic Arizona Scleroderma Service integrates multiple medical as well as surgical specialties under the direction of the Division of Rheumatology to provide coordinated and comprehensive evaluations and treatment. New clinical trials are in development. Hours: 8 a.m. to 5 p.m. Monday through Friday

Physicians Affiliated with this Center: W. Leroy Griffing, M.D.

Contacts: Diane, (480) 301-4342 (appointments and information); Leroy Griffing, M.D. (480) 301-4342 (physicians); Heidi Garcia, P.A.-C, (480) 301-4342 (research information)

Studies

Status

SCOT (Scleroderma Cyclophosphamide or Transplantation)

Recruiting

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California

Scleroderma Center at Stanford UniversityStanford-Redwood City

Stanford University Scleroderma Center, Stanford University Medical Center450 Broadway St. Department of Dermatology, Pavilion B, 4th floor, Redwood City, CA 94063
CCSR 2155c, 269 Campus Drive, Stanford, CA 94305

Appointments: 650-721-7119
Physician Inquiries: 650-493-5000 x62042
Research Inquiries: 650-721-7147

Director:  Lorinda Chung, MD, MS

Associate Director: David Fiorentino, MD, PhD

Research Coordinator: Amanda Foster

Physicians Affiliated with this Center:

  • Rheumatology:  Lorinda Chung, MD, MS
  • Gastroenterology- Linda Nguyen, MD
  • Pulmonary Medicine/Pulmonary Hypertension- Rosen, MD/Roham Zamanian, MD/Mark Nicolls, MD
  • Cardiology- Francois Haddad, MD
  • Dermatology/Dermatopathology- David Fiorentino, MD, PhD/Howard Chang, MD, PhD
  • Hand Surgery- James Chang, MD

Studies

Status

PHAROS: Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma

Active recruiting

MEDI-551: A Phase 1, Randomized, Double-blind, Placebo-controlled Study of the Safety and Tolerability of MEDI-551 in Scleroderma

Closed

Rituximab in SSc-APAH: A Randomized, Double-blind, Placebo-Controlled, Phase II Multicenter Trial of a Monoclonal Antibody to CD20 (Rituximab) in the Treatment of Systemic Sclerosis-Associated Pulmonary Arterial Hypertension

Active recruiting

An Open-Label Clinical Trial of Ambrisentan and Tadalafil Combination Therapy in Pulmonary Arterial Hypertension Associated with the Scleroderma Spectrum of Disease

Active recruiting

Revision of SSc Classification Criteria

Closed

Outcomes and Clinical Biomarkers for Scleroderma

Active recruiting

Proteomics of Inflammation, Immunity and Pulmonary Arterial Hypertension

Active recruiting

A Phase II/III, Multicenter, Randomized, Double-Blind, Placebo-Controlled Study to Assess the Efficacy and Safety of Tocilizumab versus Placebo in Patients with Systemic Sclerosis

Closed

Observational Study of Early Diffuse Cutaneous Systemic Sclerosis

Recruiting

Macitentan for the Treatment of Digital Ulcers in Systemic Sclerosis Patients

Recruiting

Pirfenidone for the Treatment of Interstitial Lung Disease in Systemic Sclerosis

Recruiting

Scleroderma Center at San FranciscoSan Francisco

University of California San Francisco, Scleroderma Program, UCSF Arthritis Center
400 Parnassus Avenue Plaza Level, San Francisco, CA 94143-0326

Clinic Information: Adult patients with systemic and localized scleroderma

Hours: 8:30 a.m. to 5 p.m. Monday through Friday, dependent on individual doctor’s hours. Interdisciplinary clinic Friday AM

Physicians affiliated with this center

  • Rheumatologists: Andrew Gross, M.D., Lianne Gensler, M.D.
  • Dermatologist: M. Kari Connolly, M.D., Anna Haemel, M.D.
  • Pulmonologists: Jeffrey Golden, M.D., Paul Wolters, M.D.
  • Cardiologists: Teresa DeMarco, M.D.
  • Gastroenterologist: Najwa El-Nachef, M.D.

Appointments: Phone: (415) 353-2497; Fax: (415) 353-2530
Online appointment requests: https://www.ucsfhealth.org/appointments/rheumatology/index.html

Contact: anna.haemel@ucsf.edu

Research Coordinators:

Resources
Scleroderma Clinic: http://www.ucsfhealth.org/clinics/scleroderma/
Interstitial Lung Disease Clinic: www.ucsfhealth.org/ild
Pulmonary Hypertension Clinic: http://www.ucsfhealth.org/clinics/pulmonary_hypertension_clinic/

Studies

Status

Scleroderma Lung Study 2
http://sls.med.ucla.edu/nav6.html

Active recruiting

Scleroderma Cohort Study

Active recruiting

University of California Los Angeles Scleroderma CenterLos Angeles

University of California, Division of Rheumatology
1000 Veteran Ave., Rehab Center Room 32-59, Box 951670, Los Angeles, CA 90095-1670
Telephone: (310) 825-8414 and (310) 825-4744
Fax: (310) 206-8606
Website: www.rheumatology.ucla.edu

Physician Affiliated with this Center:

Rheumatologists:

  • Daniel E Furst, MD
  • Philip J Clements, MD, MPH
  • Suzanne Kafaja, MD
  • Elizabeth Volkman, MD

Gastroenterologists:

  • Jeffrey Conklin, MD
  • Terri Getzug, MD
  • Kevin Ghassemi, MD

Cardiopulmonary (including interstitial lung disease and pulmonary hypertension):

  • Donald Tashkin, MD
  • Rajan Saagar, MD
  • David Ross, MD
  • Eric Kleerup, MD
  • John Belperio, MD
  • Michael Roth, MD
  • Shelley Shapiro, MD

Lung transplant surgeon:

  • Abbas Ardehali, MD

Basic Science:

  • Betty Tsao, PhD
  • Ram Raj Singh, MD

 

Studies

Status

Scleroderma Lung Study 2

http://sls.med.ucla.edu/nav6.html

Ongoing

Ambrisentan in Patients with Scleroderma

Ongoing

CRISS: Provisional Combined Response Index For Patients With Diffuse Systemic Sclerosis

Ongoing

DETECT: A Study to Determine The Best Methods to Determine if Patients Have Pulmonary Arterial Hypertension in Patients With Scleroderma

Ongoing

DISTOL: a study using Treprostinil Diethanolamine (UT-15C) or Placebo Subjects With Scleroderma

Ongoing

Imatinib (Gleevac) in Subjects with Systemic Sclerosis

Closed

Quality of Life

Ongoing

SCOT study (Scleroderma Cyclophosphamide Or Transplantation)

www.clinicaltrials.gov/ct/gui/show/NCT00114530

Ongoing

The Natural History and Outcome of Patients with Scleroderma at High Risk for or with Early Pulmonary Hypertension (PHAROS)

Ongoing

DUAL-1: A placebo-controlled study to assess the effect, safety and tolerability of macitentan in systemic sclerosis patients with finger sores due to blood flow problems

Ongoing

SLS II Study: A study comparing mycophenolate to cyclophosphamide in people with interstitial lung disease related to scleroderma

Ongoing

WA27788: A placebo-controlled study to evaluate the effect and safety of tocilizumab in patients with systemic sclerosis

Ongoing

SLS QoL: Quality of life of people with scleroderma (a questionnaire study)

Ongoing

PHAROS:  The Natural History and Outcome of Scleroderma Patients at High Risk or with Early Pulmonary Hypertension

Ongoing

Macitentan for the Treatment of Digital Ulcers in Systemic Sclerosis Patients

Active recruiting

Trials that will be opening soon at UCLA are:
Celgene Pomalidomide (CC-4047) SSc Study:
A Placebo-Controlled Study to Evaluate the Effect, Safety, and Characteristics of Pomalidomide (CC-4047) in Subjects with Systemic Sclerosis with Interstitial Lung Disease

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Colorado

National Jewish Health and University of Colorado Scleroderma ProgramCO Jewish Health

Denver
National Jewish Health, Division of Rheumatology, 1400 Jackson Street, Denver, CO 80206

AuroraCO Anschutz
University of Colorado Anschutz Medical Campus, Division of Rheumatology, Barbara Davis Center, 1775 Aurora Court, P.O. Box 6511, Mail Stop B-115, Aurora, Colorado 80045

Phone: National Jewish Health, (303) 398-1355, University of Colorado, (720) 848-1940 Website: NJH Rheumatology, http://www.nationaljewish.org/about/depts/medicine/rheum-endo-gastro/ ; University of Colorado Rheumatology, http://www.ucdenver.edu/academics/colleges/medicalschool/departments/medicine/Rheumatology/Pages/Rheumatology.aspx

Physicians Afilliated with this Center:

  • Aryeh Fischer, M.D. (NJH and U of CO)
  • Jason Kolfenbach, M.D. (U of CO)

Clinic Information: Hours: M–F 8:00 a.m. to 5:00 p.m.
Contacts: National Jewish Health: (303) 398-1355, University of Colorado: (720) 848-1940

Studies Status

PHAROS (Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma)

Open

SLS II

Closed

Rituximab in SSc-APAH: A Randomized, Double-blind, Placebo-Controlled, Phase II Multicenter Trial of a Monoclonal Antibody to CD20 (Rituximab) in the Treatment of Systemic Sclerosis-Associated Pulmonary Arterial Hypertension

Open

Ambition trial for PAH

Open

Ambrisentan for the Improvement in Right Ventricular Strain in Scleroderma-Associated Pre-Pulmonary Arterial Hypertension

Open

A Phase II Multi-Center Study of High-Dose Cyclophosphamide and Antithymocyte Globulin Followed by Autologous Hematopoietic Cell Transplantation for the
Treatment of Systemic Sclerosis (STAT study)

Closed

Allogeneic Hematopoietic Cell Transplantation after Nonmyeloablative
Conditioning for Patients with Severe Systemic Sclerosis

Closed

LOTUSS: An Open-Label, RandOmized, Phase 2 STUdy of the Safety and Tolerability of Pirfenidone when Administered to Patients with Systemic Sclerosis-Related Interstitial Lung Disease

Open

Other studies related to scleroderma: http://pulmonaryfibrosisresearch.org/

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Connecticut

Farmington Connecticut Scleroderma CenterFarmington

University of Connecticut Health Center, Division of Rheumatic Diseases/University Physicians
Marb Building, 263 Farmington Avenue, 3rd Floor, Farmington, CT 06030

Phone: (860) 679-2160 Website: http://nemsi.uchc.edu/clinical_services/rheumatology/index.html

Physicians Affiliated with this Center:

  • Naomi Rothfield, M.D.
  • Santhanam Lakshminarayanan, M.D.

Clinic Information: Adults 18 years and older with localized or systemic scleroderma
Hours: 8 a.m. to 4:30 p.m. Monday through Friday
Appointments and Information: (860) 679-2160
Physicians Inquiries: (860) 679-4362

Research Information: Susan Urrows, R.N., (860) 679-2589 or Elena Breen (860) 679-2167

Studies

Status

Two-Stage Prospective Observational Cohort Study in Scleroderma Patients to Evaluate Screening Tests and the Incidence of Pulmonary Arterial Hypertension and Pulmonary Hypertension - The DETECT Study

Ongoing

An Open Label Trial to Evaluate the Safety of Dasatinib in the Treatment of Scleroderma Pulmonary Interstitial Fibrosis

Ongoing

New Haven

yale university.pngYale University
http://medicine.yale.edu/intmed
Treats all forms of scleroderma, adults only

Scleroderma:
The Interventional Immunology Center
Yale Arthritis and Rheumatic Disease
6 Devine St., North Haven, CT 06473.
Phone (203) 287-6200
Fax (203) 287-6101
New patient referrals:
Phone (203) 737-5430
Fax (203)785-7053
Website: http://medicine.yale.edu/intmed/rheumat

Scleroderma-associated lung disease (ILD/ fibrosis &/or pulmonary hypertension):
Winchester Chest Clinic
Fitkin Memorial Pavilion
789 Howard Ave, 2nd Floor, New Haven, CT 06519
Appointment: (203) 785-4198
Fax: (203) 737-5453
Website: http://medicine.yale.edu/intmed/pulmonary 

Hours: 8:00 a.m. - 5:00 p.m. Monday through Friday.

Scleroderma Center Contact: wassim.fares@yale.edu

Research Information:
Donna Carrano, RN, BSN
Research Nurse
Email: donna.carrano@yale.edu
Phone: (203) 737-5061
Fax: (203) 785-4787

Physicians Affiliated with this Center:

  • Danielle Antin-Ozerkis, MD (Pulmonary, Critical Care, & Sleep Medicine)
  • Richard Bucala, MD PhD (Rheumatology, Epidemiology, and Pathology)
  • Lenore Buckley MD, MPH (Rheumatology section)
  • Shawn E. Cowper MD (Dermatology & Pathology)
  • Joseph Craft, MD (Rheumatology section)
  • Wassim H. Fares, MD MSc (Pulmonary, Critical Care, & Sleep Medicine)
  • Mridu Gulati, MD (Pulmonary, Critical Care, & Sleep Medicine)
  • Kevan Herold, MD (Rheumatology section)
  • Erica Herzog, MD (Pulmonary, Critical Care, & Sleep Medicine)
  • Insoo Kang, MD (Rheumatology section)
  • Terence K. Trow, MD (Pulmonary, Critical Care, & Sleep Medicine)
Studies Status

High Dimensional Phenomics in Scleroderma Lung Involvement

Recruiting

Innovative Studies of Pulmonary Fibrosis

Recruiting

Biorepository of blood and tissue samples

Recruiting

Chitinase-1 as a Biomarker and Therapeutic Target in Scleroderma Lung Disease

Basic science study

The role of immune complex in activating monocytes in Scleroderma

Basic science study

The phenotypic and functional characteristics of CD8+ T-cell subsets in Scleroderma

Basic science study

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District of Columbia

Georgetown University Scleroderma CenterWashington, D.C.

Georgetown University, PHC Building, Dept. of Rheumatology
3800 Reservoir Road, 6th Floor, Washington, DC 20007

Clinic Information: Adult and pediatric patients seen with localized and systemic scleroderma.

Physicians affiliated with this center: Virginia Steen, M.D.

Hours: Tuesday 9 a.m. to 3 p.m. Tuesday; 1 p.m. to 5 p.m. Wednesday; some Fridays

Appointments: Ms. Davis (202) 444-6200

Physicians: (202) 444-6200, (202) 687-6316, or email steenv@georgetown.edu

Research Information: Carolyn Fridley (202) 444-6211 cef65@georgetown.edu or Maia Zulmatashvili (202) 444-6210 mz381@georgetown.edu

Studies

Status

Study of Pomalidomide (CC-4047) to Evaluate the Safety, Tolerability, Pharmacokinetics, Pharmacodynamics and Effectiveness for Subjects with Systemic Sclerosis with Interstitial Lung Disease: www.sclerodermastudy.com

Active Recruiting

Prospective, randomized, placebo-controlled, double-blind, multicenter, parallel group study to assess the efficacy, safety and tolerability of macitentan in patients with ischemic digital ulcers (DUAL)

Active Recruiting

A Double-Blind, Placebo-Controlled Study of Intravenous Immunoglobulin Treatment for Skin Disease in Systemic Sclerosis (IVIG)

Active Recruiting

Georgetown University Scleroderma Study (PRESS)

Active Recruiting

An Open-Label, Randomized, Phase 2 Study of the Safety and Tolerability of Pirfenidone when Administered to Patients with Systemic Sclerosis-Related Interstitial Lung Disease (LOTUSS)

Not Yet Recruiting

Genome Research in African American Scleroderma Patients (GRASP)

Not Yet Recruiting

Genome Research in African American Scleroderma Patients (GRASP)

Not Yet Recruiting

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Florida

Weston

Cleveland Clinic Florida
2950 Cleveland Clinic Boulevard, Weston FL 33331
www.clevelandclinicflorida.org 
Clinic Information: Monday-Friday, 8:00 a.m. to 5:00 p.m. dependent on individual doctor's office hours.

Physicians affiliated with this center:

  • Pulmonary Hypertension and Interstitial Lung Disease(ILD) : Franck Rahaghi, M.D., Jinesh Mehta, M.D.
  • Interstitial Lung Disease(ILD) : Gustavo Ferrer, M.D.
  • Rheumatology: Hossam Elzawawy, M.D., Kari Sutter, M.D.
  • Cardiology: Gian Novarro, M.D., Viviana Navas, M.D.
  • Hand Surgery: David Friedman, M.D.Nephrology/Hypertension: Rute Paixao, M.D.
  • Gastroenterology: Alison Schneider, M.D.
  • Dermatology: Darron Digiulio, D.O.
  • Vascular Medicine: Mehrdad Farid, M.D., Carmel Celestin, M.D.

Phone: 954-659-5000 (for information) and 954-659-5124 (for appointments) 

Studies Status
Macitentan for the Treatment of Digital
Ulcers in Systemic Sclerosis Patients
(DUAL-1)
Recruiting

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Illinois

Northwestern University Scleroderma CenterChicago

Northwestern Scleroderma Program, Northwestern Medical Faculty Foundation at Northwestern Memorial Hospital
675 N St Clair St, Suite 14-100, Chicago, IL  60611 (Clinical Offices)
240 E Huron St, M-300, Chicago, IL  60611 (Research Laboratories)
http://www.scleroderma.northwestern.edu/ (website)

Appointments: 312-695-8628 (Returning patients)
Physician Inquiries: 312-503-1137 (and new patient appts)
Research Inquiries: 312-503-1137
Fax: 312-926-2967

John Varga, MD Director
Monique Hinchcliff, MD, MS Director of Translational Research
Mary Carns, MS Research Coordinator

Physicians Affiliated with this Center:

  • Rheumatology: John Varga, MD and Monique Hinchcliff, MD, MS
  • Gastroenterology: Ikuo Hirano, MD and Darren Brenner, MD
  • Pulmonary Medicine/Pulmonary Hypertension: Jane E. Dematte, MD, Michael Cuttica, MD, MS, and Rishi Raj, MBBS
  • Cardiology: Sanjiv Shah, MD and Benjamin Freed, MD
  • Dermatology/Dermatopathology: Anne Laumann, MBChB, MRCP (UK) and Emily Keimig, MD
  • Hand Surgery: Gregory Dumanian, MD
  • Nephrology: Cybele Ghossein, MD

Studies

Status

Mechanisms of Fibrosis in Scleroderma

Active

Genetic Polymorphisms in Scleroderma

Active

Novel Biological Therapies for Scleroderma Lung Disease

Active

PHAROS (The Natural History and Outcome of Patients with Scleroderma at High Risk for or with Early Pulmonary Hypertension)

Active

Northwestern Scleroderma Program Patient Registry

Active

University of Chicago Scleroderma CenterUniversity of Chicago, Scleroderma Clinic
5841 South Maryland Ave., Chicago, IL 60637

Clinic Information: Adult patients seen with systemic and localized scleroderma. Hours: 8 a.m. to 5 p.m Monday through Friday.

Physicians Affiliated with this Center:

  • Dr. Michael Becker
  • Dr. Marcus Clark
  • Dr. James Curran
  • Dr. Richard Keating
  • Dr. Tammy Utset
  • Dr. Saima Chohan
  • Dr. Michael Ellman
  • Dr. Timothy Niewold

Appointments: (773) 702-6119
Physician Inquiries: (773) 702-5379
Research Information: Misel Ramirez at mramirez@medicine.bsd.uchicago.edu

University of Illinois at ChicagoUniversity of Illinois at Chicago Outpatient Care Center (OCC)
1801 West Taylor St., Suite 3A, 3rd Floor, Chicago, Illinois 60612

Clinic Information: Special Medicine Clinic;  Patients Seen: Adults, systemic and localized sclerosis; Hours: 8 a.m. to 12 p.m. Tuesday and Thursday

Physician Affiliated with this Center:

  • Shiva Arami, M.D.
  • William Swedler, M.D.
  • Dean Schraufnagel, M.D.
  • Suncica Volkov, M.D.

Research Contact: Dana Franklin, (312) 355-0968, danfran@uic.edu

Clinic Registration: (312) 355-0900
Appointment Scheduling: Dana Franklin, (312) 355-0968, danfran@uic.edu
Physician Inquiries: (312) 413-9310 or (312) 996-8039 (Dr. Dean Schraufnagel)

Studies

Status

Scleroderma Lung Study

Closed

Build-2 Study

Closed

Scleroderma Lung Study, December 2005

Closed

Build-2 Study, December 2005

Closed

University of Illinois at Chicago, Section of Rheumatology
1819 W. Polk St., A312 M/C 733, Chicago, IL 60612

Appointments: (312) 413-4244
Physician Affiliated with this Center: Nadera J Sweiss, M.D.
Research Coordinator- Latriese V Sardin- (312) 413- 9310

Study of Pomalidomide (CC-4047) to Evaluate the Safety, Tolerability, Pharmacokinetics, Pharmacodynamics and Effectiveness for Subjects with Systemic Sclerosis with Interstitial Lung Disease: www.sclerodermastudy.com

Actively Recruiting

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Louisiana

New Orleans

Louisiana State University Health
LSU Health Care Network
St. Charles Multi-Specialty Clinic
3700 St. Charles Ave, 4th Floor
New Orleans, LA  70115
(P): 504-412-1705
 
LSU-Health Care Services Division
1400 Poydras St.
New Orleans, LA  70112
(P): 504-903-2373
 
LSU Health – Interim LSU Public Hospital
2021 Perdido St.
New Orleans, LA  70112
(P): 504-903-5700

The St. Charles Multi-Specialty Clinic and LSU-Health Care Services Division (Lord and Taylor) are clinics. The LSU Health – Interim LSU Public Hospital is our main hospital.

  • Lesley Ann Saketkoo, MD, MPH – Director, Rheumatology, Pulmonary Medicine
  • Bennett de Boisblanc, MD - Pulmonary Medicine
  • Matthew Lammi, MD- Pulmonary Medicine
  • Frank Smart, MD - Cardiology
  • Raman Danrad, MD - Radiology
  • Paula Lauto, RN - Pulmonary
  • Van T. Himel, DDS - Dentistry and Oral Medicine
  • Monika Kowalczyk, MD - Gastroenterology
  • Tamarin Hennebury, LOTR - Occupational Therapy
  • Tracy LeGros, MD, PhD - Emergency Medicine and Wound Care, Hyperbaric Specialist

Studies

Status

1. Eular Scleroderma Trials and Research (EUSTAR)

Open

 2. Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma (PHAROS)

Open

3. Genome Research in African American Scleroderma Patients (GRASP)

Open

 4. Louisiana and Gulf Area Study

Open

 5. Patient Perspectives in Systemic Sclerosis Interstitial Lung Disease

Open

 6. Patient Perspectives in Systemic Sclerosis Pulmonary Hypertension

Open

 7. Patient Perspectives in Calcinosis

Open

 8. Development of World Health Organization's International Classification of Functioning, Disability and Health Core Set in Systemic Sclerosis

Open

 9. GRASP - Genome Research in African American Scleroderma Patients (GRASP) Study  - which is an NIH funded study examining clinical features and genetics of scleroderma in a population that experiences severe manifestations of scleroderma.

Open

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Maryland

Johns Hopkins Scleroderma CenterBaltimore

Johns Hopkins University School of Medicine, Johns Hopkins Scleroderma Center
5501 Hopkins Bayview Circle, Baltimore, MD 21224.

Website: www.hopkinsscleroderma.org

Clinic Information: Sees patients with systemic and localized forms of scleroderma, Raynaud’s, scleromyxedema, eosinophilic fasciitis and scleroderma. Hours: 9 a.m. to 3:30 p.m. Monday through Friday.

Physicians Affiliated with this Center:

  • Fredrick Wigley, M.D., Director
  • Laura Hummers, M.D., Co-Director
  • Francesco Boin, M.D.; Ami Shah, M.D.
  • Zsuzsanna McMahan, M.D.

Clinical Appointments: Regina Greco RN or Consuelo Laws at (410) 550-7715; Fax, (410) 550-1363

Research Information: Cynthia Anderson, Research coordinator, (410) 550-8582, canderson@jhmi.edu
Research interests: Raynaud’s Phenomenon, Scleroderma Lung Disease, Autoimmunity, and Vascular Disease

Studies

Status

Cohort Study to Determine Markers for the Development of Severe Vascular Events in Scleroderma

Not enrolling

T Cell Response in Scleroderma Lung Disease: From Pathogenesis to Clinical Care

Call for status

Determination of the skin collagen turnover and circulating immune cell proliferation/survival profiles in scleroderma patients

Call for status

Evaluation of Abnormal Cardiac Hemodynamics in Scleroderma

Call for status

Do cancer antigens propagate an immune response and activate the disease process in scleroderma?

Call for status

Macitentan for the Treatment of Digital Ulcers in Systemic Sclerosis Patients

Active recruiting

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Massachusetts

Boston University Scleroderma CenterBoston

Boston University Scleroderma ProgramShapiro Ambulatory Care Center
725 Albany Street, 7th Floor, Suite 7B (Clinical Offices)
Boston, MA 02118 

Scleroderma Center
72 East Concord Street, Evans 501 (Research Offices)
Boston, MA 02118
 
http://www.bu.edu/cort/clinical-trials/
http://www.bumc.bu.edu/rheumatology/scleroderma/

Patient Appointments: Jessica Ziemek (617) 638-5383
General Inquiries: (617) 638-4486
Clinical Trial Inquiries:
Eric Stratton (617) 414-2507
Britte Beaudette-Zlatanova (617) 638-5965
Jessica Ziemek (617) 638-5383

Scleroderma Specialists Affiliated with this Center

Rheumatology:
Robert Lafyatis, MD
Robert W. Simms, MD
Michael York, MD

Pulmonary Medicine/Pulmonary Hypertension/Interstitial Lung Disease:
Harrison Farber, MD
Arthur Theodore, MD

Dermatology/Dermatopathology:
Dr. Christina Lam

Studies

Status

DUAL-2: Digital Ulcers with mAcitentan in systemic scLerosis

Enrolling

Rilonacept: randomized, double-blind, placebo-controlled trial of IL1-TRAP- A phase I/II biomarker trial in patients with diffuse systemic sclerosis

Enrolling

LOTUSS study: Pirfenidone in scleroderma-associated interstitial lung disease

Enrolling

MRI in SSc-ILD:  Quantification of septal thickening in scleroderma patients with interstitial lung disease utilizing hyperpolarized 129Xe MRI

Enrolling

Pomalidomide:  A Phase II multicenter, randomized, double-blind, placebo-controlled study of pomalidomide in diffuse systemic sclerosis with interstitial lung disease

Enrolling

Rituximab:  A randomized, double-blind, placebo-controlled, Phase II multicenter trial of Rituximab for the treatment of systemic sclerosis-associated pulmonary arterial hypertension

Enrolling

Clinical Research Studies

Status

CORT: Identification of biomarkers for disease activity and progression in scleroderma.

Enrolling

Fibroblast:  Fibroblast and immune cell culture from skin

Enrolling

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Michigan

University of Michigan Scleroderma CenterAnn Arbor

University of Michigan, Scleroderma Program1500 E. Medical Center Drive, 3rd Level Taubman Center, Clinic Areas A and C, Ann Arbor, MI 48109-0370

Appointments: (734) 647-5900 or (888) 229-3065
Physician Inquiries: : (734) 647-5900

Research Inquiries: Stacey Anderson, (734) 232- 2119, Jennelle Shaw (734) 936-4555

  • Dinesh Khanna, M.D., M.S. Director
  • Elena Schiopu, M.D.

 Studies

Status

LOTUSS

Enrolling

 Rituximab

Enrolling

Celgene

Enrolling

PRESS

Enrolling

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Minnesota

Minneapolis

Fairview University Medical Center Scleroderma Clinic
420 Delaware SE, Clinic 2A, Phillip Wagensteen Building, Minneapolis, MN 55445

Clinic Information: 8 a.m. to 4:30 p.m. Monday through Friday

Clinic Number: (612) 625-8690

Physicians associated with the facility

  • Gastroenterology: Dr. Ronald Soltis
  • Pulmonary: Dr. Hyun Kim
  • Cardiology: Dr. Monica Colvin-Adams; Dr. Mark Pritzker; Dr. Daniel Duprez
  • Rheumatology: Dr. Jerry Molitor

Patients will be triaged by Lee Anderson.

The currently approved studies being conducted by Dr. Jerry A. Molitor:

Studies

Status

THE DETECT STUDY: "A Two-Stage Prospective Observational Cohort Study to Evaluate Screening Tests and the Incidence of Pulmonary Arterial Hypertension / Pulmonary Hypertension (PAH and PH)". This study requires that the patient be diagnosed with SSc > 3 years and have a DLCO < 60% with FV>40%. The study requires a Right Heart Catheterization as this is the gold
standard for the diagnosis of PAH/PH. (IRB # 0807M39661)

Active

PHAROS: This study is to identify patients at the highest risk for the development of PAH in the future to determine if early intervention will prevent or delay the irreversible disease. (IRB # 0710M18661)

Active

The DISTOL-1 STUDY, a phase II randomized, double-blind, placebo-controlled study to assess the efficacy of treprostinil diethanolamine in reducing the digital ulcer burden compared to placebo in patients with SSc. In addition to evaluating the prevention and/or formation of new ischemic digital ulcers, will be the assessment of the reduction in total active ulcers, reduction in pain and the assessment of patient function. (IRB # 0812M54822)

Active

The G-WAS SCLERODERMA REGISTRY, funded by NIH: "A Two-Stage Genome-Wide Association Study in Systemic Sclerosis. This primarily involves one appointment, which allows us to gather patient medical history information related to their SSc, and one blood draw. There is no clinical examination. The data and specimen collection will allow for study of specific genes as they relate to scleroderma and potentially other autoimmune diseases. (IRB # 0812M55641)

Active

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New Jersey

Hackensack

Division of Pediatric Rheumatology, Joseph M. Sanzari Children’s Hospital
Hackensack University Medical Center
30 Prospect Ave, Hackensack, NJ 07601
Website: www.hackensackumc.org

Clinic Information:

Patients up to age 22 who have localized scleroderma (circumscribed morphea, linear scleroderma, other subtypes), systemic sclerosis, and other sclerosing diseases are seen by appointment.

Appointments and information - Patients seen by referral only in the Pediatric Rheumatology offices on the 3rd floor of the WFAN-Imus Pediatric Building. Practice is limited to patients from newborn to 22 years of age.

Phone: (551) 996-5306
Fax: (201) 996-9815

Hours: Monday, Wednesday, Thursday 9:00 a.m. - 5:00 p.m.

Physicians affiliated with this center:

Rheumatology:

  • Suzanne C. Li, MD PhD
  • Kathleen A Haines, MD
  • Yukiko Kimura, MD
  • Ginger Janow, MD
  • Jennifer Weiss, MD

Dermatology:

  • Helen Shin, MD
  • Emily Berger, MD

Radiology:

  • Melissa Liebling, MD
  • Michael McGuire, MD

Clinic Contact: Johnslyn Rochester 

Research information: Dr. Li has led collaborative groups of pediatric rheumatologists, dermatologists, and radiologists working to improve the long-term outcome of juvenile localized scleroderma (jLS). A major focus has been to develop clinical and ultrasound measures for jLS that sensitively evaluate and monitor disease state as such tools can improve treatment strategies and enable treatment efficacy studies. Dr. Li has co-led work to develop standardized treatment regimens for jLS and is currently conducting a pilot prospective study to evaluate the feasibility of conducting jLS comparative treatment efficacy studies. She is working with other pediatric rheumatologists on developing standardized regimens and tools for juvenile systemic sclerosis. 

Studies

Status

Development of Clinical and Ultrasound Measures for Localized Scleroderma (LOCUS-2)

Actively recruiting

Quality of Life in Pediatric Localized Scleroderma

Actively recruiting

jLS Consensus Treatment Plans Pilot Study

Closed to enrollment/in progress

CARRA Registry for Juvenile Localized Scleroderma

Closed to enrollment/in data analysis

CARRA Registry for Juvenile Systemic Sclerosis

Closed to enrollment/in data analysis

New Brunswick Scleroderma Center

New Brunswick

Rutgers-RWJ Medical School Scleroderma Program
125 Patterson St., 5th floor, Clinical Academic Building, UMDNJ-RWJ, New Brunswick, NJ 08903

Clinic Information: Adult patients seen with morphea, localized and scleroderma spectrum disorders. Hours: New patients seen on Tuesdays from 8 a.m. to 12 noon. Follow-up patients seen on Wednesdays 8 a.m. to 5 p.m.

Appointments and information: (732) 235-7217
Fax: (732) 235-6526

Physician inquiries: 732-418-8484 (Clinical Research Center)

Physicians Affiliated with this Center:
Vivien M. Hsu, M.D., Director, UMDNJ Scleroderma Program

Research Information: We are actively involved with multiple clinical trials of novel treatments and anti-fibrotic agents for systemic sclerosis. Our research aims to find better treatment options for pulmonary fibrosis, pulmonary hypertension, Raynaud's, digital ulcers, myopathy, and other complications seen with this devastating disease.

Contact: Research coordinators: Debbie McCloskey, R.N., Nurse Manager, Clinical Research Center, Helina Malveax, and Fei Chen at (732) 418-8484

Studies

Status

Topical Nitroglycerin Gel for Raynaud’s – Open Label

Closed

SCOT (Scleroderma Cyclophosphamide or Transplantation)

Closed

STRIDE 3 Open Label Sitaxsentan for treatment of Pulmonary Hypertension

Closed

RAPIDS 2 - Open Label Bosentan for treatment of Digital Ulcers

Closed

PHAROS Pulmonary Hypertension Assessment Registry of Scleroderma

Recruiting

Scleroderma Lung Study (2) (for scleroderma-related pulmonary fibrosis)

Closed

Actelion Dual Study (for scleroderma digital ulcers)

Closed

Tyvaso Registry (for scleroderma pulmonary hypertension)

Recruiting

Scleroderma Classification Criteria Study (Scleroderma Consortium project)

Recruiting

Roche study of IL6 (for scleroderma skin/lung)

Closed

Celgene - (for scleroderma lung/skin disease)

Recruiting

Macitentan for the Treatment of Digital Ulcers in Systemic Sclerosis Patients

Recruiting

Sanofi (open label study; phase 2A):

Open

Sanofi (TARGET) of IL-6 for rheumatoid arthritis

Open for recruitment

Scleroderma clinical trials Consortium (SCTC)- investigator initiated observational studies: in calcinosis &  myopathy

Open for recruitment

GRASP (genetic study of African Americans with scleroderma)-

Pending regulatory

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New York

Albany

Steffans Scleroderma CenterSteffens Scleroderma Center
1367 Washington Avenue, Suite 101, Albany, New York 12206
Website: 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.

Physicians Affiliated with this Center:

  • Lee Shapiro, M.D.
  • Dr. Axia Toledo- Garcia, M.D., Associate Medical Director

New Patient Referrals and Appointments
Appointments are available in either the Albany or Saratoga office. Please direct all requests for appointments to:
Lori French

New Patient Coordinator
6 Care Lane, Saratoga Springs NY 12866
Phone: (518) 584-4953
Direct Fax: (518) 533-1369
lfrench@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:  Sharyn Freitas, Clinical Research Coordinator, (518) 584-4953 Ext. 402, fax: (518) 584-7916; or email sharyn.freitas@acphs.edu

Studies

Status

PHAROS (Observational Study of Natural History of Pulmonary Hypertension)

Active

SCOT Study (Scleroderma Cyclophosohamide Or Transplantation)

Closed

Topical Therapy for Raynaud’s

Closed

DUAL1 Digital Ulcer Study

Closed

DETECT Study (Pulmonary Hypertension diagnosis

Closed

Macitentan for the Treatment of Digital Ulcers in Systemic Sclerosis Patients

Closed

Great Neck

North Shore-LIJ Health System; Division of Rheumatology and Allergy-Clinical Immunology
865 Northern Blvd, Suite 302 Great Neck, NY 11021

Clinic Information: Adult patients seen with systemic and localized scleroderma

Contact: (516) 708-2550 (Appointments)

(516) 708-2558 (Research Coordinator, Laura Donohue)

Email: ldonohue@nshs.edu

Physicians Affiliated with this Center:

  • Richard Furie, MD
  • Galina Marder, MD
  • Maria Louise Barilla-LaBarca, MD
  • Diane Horowitz, MD

Studies

Status

Macitentan for the Treatment of Digital Ulcers in Systemic Sclerosis Patients

Recruiting

Pomalidomide for patients with Scleroderma and Interstitial Lung Disease

Recruiting

PHAROS: Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma

Recruiting

New York City

hospital special surgery scleroderma

Hospital for Special Surgery
525 East 71st Street, Belaire 7, New York, N.Y. 10021

Phone: (212) 774-2048 | Fax: (212) 774-2358
Website: http://www.hss.edu/scleroderma-vasculitis-center.asp

Clinic Information:  Adult patients seen with systemic and localized scleroderma. Hours: 9 a.m. to 5 p.m. Monday through Friday.

Physicians Affiliated with this Center:

  • Dr. Robert F. Spiera
  • Dr. Jessica Gordon

Appointments: Elizabeth Soto- Cardona, (212) 606-1173

Physician Inquiries: Dr. Robert Spiera, (212) 774-2048; Dr. Jessica Gordon, (212) 606-1173

Research Information: Uzunma Udeh, (212) 774-2123; or Nina Paddu, (212) 774-7194

Studies

Status

BELIMUMAB vs Placebo with Mycophenalate in the Treatment of Systemic Sclerosis: A trial to determine the safety, efficacy, and tolerability of belumimab in combination with mycophenalate mofetil in the treatment of early diffuse cutaneous systemic sclerosis.

Active, recruiting

TOCILIZUMAB vs Placebo in Patients with Systemic Sclerosis: A trial to evaluate the safety and effectiveness of the experimental drug tocilizumab vs. placebo in patients with systemic sclerosis.

Active, recruiting

MACITENTAN in Patients with Ischemic Digital Ulcers Associated with Systemic Sclerosis: A trial to evalate the effectiveness and safety of macitentan, to reduce the number of new digital ulcers associated with systemic sclerosis.

Active

NILOTINIB in the treatment of systemic sclerosis: 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, filled

GLEEVEC in the Treatment of Systemic Sclerosis: A trial to determine the safety and tolerability of a medication called Gleevec in systemic sclerosis.

Completed

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

The Use of a Submaximal Stress Test to Identify Pulmonary Arterial Hypertension in Patients with Scleroderma: A study of a 3-minute step exercise test to identify pulmonary hypertension in patients with scleroderma.  Patients must have undergone a right heart catheterization within the prior 24 months to qualify for this study.

Active recruiting

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North Carolina

Durham

Duke Scleroderma CenterDuke Scleroderma Research Center Clinic
Duke Clinic IJ, Durham, NC 27710
www.dukemedicine.org/treatments/inflammatory-and-immune-disorders/scleroderma

Clinic Information: Adult and pediatric patients seen with systemic scleroderma. Hours: 8 a.m. to 5 p.m. Monday through Friday. Duke also has a Pulmonary Vascular Disease Clinic.

Physicians Affiliated with this Center:

  • Ankoor Shah, MD (Rheumatology)
  • Terry Fortin, MD (Pulmonary Hypertension)
  • Lake Morrison, MD (Pulmonary Fibrosis)
  • Rahul Shimpi, MD (Gastroenterology)
  • Rambi Cardones, MD (Dermatology)
  • Keith Sullivan, MD (Cellular Therapy)

Appointments and information: Abby Krichman, Research Associate and Pulmonary Vascular Disease Manager, (919) 684-9254

Appointments: (919) 613-2243
Physicians Inquiries and Research information: Ankoor Shah, MD (919) 684-4499

Studies

Status

SCOT (Scleroderma Cyclophosphamide or Transplantation)
www.sclerodermatrial.org

Recruiting

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Ohio

Toledo

University of Toledo Scleroderma Program
The Ruppert Center at university of Toledo Health center campus
3120 Glendale Ave, 1st floor
Toledo, Ohio 43614
Phone: 419-383-4271
Fax: 419-383-6244
Appointments: 419-383-3742

Clinic Information: Adult, adolescent and pediatric patients seen with systemic and localized scleroderma. Hours: 9 a.m. to 5 p.m. Monday through Friday

Physicians Affiliated with this Center:

  • Bashar Kahaleh, M.D. Rheumatology.
  • Nezam Altorok MD. Rheumatology.
  • Samer Khoury, M.D. Pulmonary hypertension.
  • Ragheb Assaly, M.D. Interstitial lung disease.
  • Ali Nawras, M.D., Gastroenterology, motility disorder
  • Yongqing Wang, Ph.D. Basic research
  • Stephanie Smiddy, R.N. Research coordinator.

The center was established in 1992; currently we follow an approximately 120 SSc patients who are investigated on regular bases. The core physicians affiliated with the center cover all facets of care needed in scleroderma. Over the years the center was involved in most of the major national and international clinical trials in SSc. Currently we are involved in the following studies:

Studies

Status

Randomized Open Label Phase II/III Multicenter of High Dose Immunosuppressive Therapy (SCOT) Active
Role of vasopressin in scleroderma pathogenesis

Active

A Phase 2, Proof-of-Concept, Multicenter, Randomized, Double-Blind, Placebo-Controlled Study to Evaluate the Safety, Tolerability, Pharmacokinetics, Pharmacodynamics and Efficacy of Pomalidomide (CC-4047) in Subjects with Diffuse Cutaneous Systemic Sclerosis with Interstitial Lung Disease.

Active

Prospective, randomized, placebo-controlled, double-blind, multicenter, parallel group study to assess the efficacy, safety and tolerability of macitentan in patients with ischemic digital ulcers associated with systemic sclerosis. Active
A Phase II/III, Multicenter, Randomized, Double-Blind, Placebo-Controlled Study To Assess The Efficacy And Safety Of Tocilizumab Versus Placebo In Patients With Systemic Sclerosis. Active
Pulmonary Arterial Hypertension (PAH) Quality Enhancement Research Initiative (QuERI) Extension Program. Active
The Effects of Pomalidomide, CC-220 and CC-122 on Scleroderma Vascular and Fibrotic Disorders. Active
Epigenetic modification of endothelial and fibroblast gene expression in scleroderma. Active

Educational Activities

The center has been active in Scleroderma Foundation NW Ohio Chapter. We participate regularly in speaking engagements at patient support group’s meetings, co-organize annual walk for cure fundraiser and provide CME talks on topics related to scleroderma at the University of Toledo and the various hospitals in NW Ohio.  Moreover, members presented abstracts and posters related to scleroderma regularly at the ACR, Scleroderma research workshops and world scleroderma congress meetings.

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Pennsylvania

Philadelphia

Scleroderma Center Listing_TJU pic.jpgThe Scleroderma Center of Thomas Jefferson University
833 Chestnut Street, Suite 740, Philadelphia, PA  19107 (Clinical Offices)
Suite 509, Bluemle Life Sciences Building (Research Laboratories)

Appointments: 215-955-6680
Physician Inquiries: 215-503-5042
Research Inquiries: 215-503-2113

Sergio A. Jimenez, M.D., M.A.C.R., Director
Fabian A. Mendoza, M.D., F.A.C.R., Associate Director
Kathryn O’Bryen, RN, BSN; Research Coordinator

Physicians Affiliated with this Center:

Rheumatology: 215-955-8430

  • Oscar H. Irigoyen, M.D., F.A.C.R.

Gastroenterology

  • Sidney Cohen, M.D.
  • Anthony J. DiMarino, Jr., M.D.

Pulmonary Medicine/Pulmonary Hypertension

  • Sandra B. Weibel, M.D.
  • Michael Scharf, M.D.

Cardiology

  • Albert N. Brest, M.D.
  • Philip Nimoityn, M.D.
  • Howard H. Weitz, M.D.

Dermatology/Dermatopathology

  • Jason B. Lee, M.D.

Dental Surgery

  • Niles Nicolo, D.D.S.

Hand Surgery

  • Lee A. Osterman, M.D.

Studies

Status

The effects of Nilotinib in Diffuse Systemic Sclerosis (SSc) of Recent Onset and Rapid Progression (Phase II Study) NIAD/NIH Approved.
Protocol Development.
Rituximab vs Placebo for Systemic Sclerosis Associated Pulmonary Hypertension Actively enrolling
A prospective observational study of mycophenolate treatment for Scleroderma Actively enrolling
Tocilizumab vs Placebo in patients with Systemic Sclerosis Actively enrolling
Immune Cellular and Molecular Mechanisms in Systemic Sclerosis (Scleroderma) Actively enrolling
Development and Analysis of a Comprehensive Clinical and Laboratory Data Collection on Patients With Sclerosing Diseases Actively enrolling
The Identification of Novel Markers for Systemic Sclerosis Employing Proteomics Actively enrolling
Stratification of Symptoms and Evaluation of the Presence and Quantification of Autoantibodies in Patients with Diffuse and Limited Scleroderma” Actively enrolling
Elucidating the role of non-coding RNAs in MS and SSc Actively enrolling
Role of microRNA in the pathogenesis of Tissue Fibrosis and Vasculopathy in SSc Actively enrolling
Functional Anti-muscarinic Antibodies: A Possible Etiology for Anorectal Dysmotility in Scleroderma Actively enrolling

Philadelphia

Hospital of the University of Pennsylvania
3400 Civic Center Boulevard, Suite 300S
Philadelphia, PA  19104

Physicians Affiliated with this Center:

  • Peter Merkel, M.D.
  • Chris Derk, M.D.
  • Nora Sandorfi, M.D.

For Appointments Call 215-662-2454

Research Coordinators:

  • Leah Madden, 215-614-4406, Leah.Madden@uphs.upenn.edu
  • Brian Rice, 215-614-4407,  brian.rice@uphs.upenn.edu 

Fax: 215-614-4412

Studies

Status

PHAROS (Pulmonary Hypertension Assessment Registry of Scleroderma)

 Actively Recruiting

An open label study of Ambrisentan with antifibrotic agent combination therapy in treatment of diffuse systemic sclerosis

 Actively Recruiting

Phase II, Proof-of-concept, multicenter, randomized, double-blind, placebo-controlled study to evaluate the safety, tolerability, pharmacokinetics, pharmacodynamics, and efficacy of pomalidomide in subjects with systemic sclerosis with interstitial lung disease.

 Actively Recruiting

Pittsburgh

Presby.jpgUPMC & University of Pittsburgh, Arthritis and Autoimmunity Center

Falk Medical Building, Suite 2B, 3601 Fifth Avenue, Pittsburgh PA 15213
http://www.dept-med.pitt.edu/rheum/scleroderma.html

Clinic Information: Adult and pediatric patients seen with localized and systemic scleroderma or Raynaud Disease. Hours: 8 a.m. to 5 p.m. Monday through Friday.

Faculty Affiliated with this Center:

  • Thomas A. Medsger, Jr. M.D.
  • Robyn T. Domsic, M.D., MPH

Appointments: (412) 647-6700

Research Information: Dana Ivanco, (412) 648-7040; or Maureen Laffoon, (800) 603-8960.

Studies

Status

Banking of Biological Samples and Collection of Clinical Data for Connective Tissue Disease Research

Actively Recruiting

Systemic Sclerosis Twin Study

Closed

PHAROS – Pulmonary Hypertension Assessment Registry of Scleroderma

Actively Recruiting

PRESS Registry

Actively Recruiting

Rituximab (Rituxan) Study

Actively Recruiting

DUAL-1 Digital Ulcer Study

Closed

Tocilizumab (Actemra)

Closed

Pomalidomide

Actively Recruiting

Ultrasound Detection of Tendon Pathology in Systemic Sclerosis

Actively Recruiting

Macitentan for the Treatment of Digital Ulcers in Systemic Sclerosis Patients

Closed

LOTUSS Trial: An Open-Label, Randomized, Phase 2 Study of the Safety and Tolerability of Pirfenidone When Administered to Patients With Systemic Sclerosis−Related Interstitial Lung Disease

Actively Recruiting

University of Pittsburgh Children's Hospital

UPMC & University of Pittsburgh, Children’s Hospital of Pittsburgh, Pediatric Rheumatology Department

4401 Penn Avenue, Pittsburgh, PA  15224 (Clinical Offices)
http://www.chp.edu/CHP/rheumatology

Clinic Information:  Pediatric patients seen with localized and systemic scleroderma.
Hours: 8 a.m. to 5 p.m. Monday through Friday.

Kathryn S. Torok, MD, Director
Christina Kelsey, MSED, Research Coordinator
Kelsey Magee, Research Technician

Appointments: (412) 692-5081
Research Inquiries: (412) 692-6478

Physicians Affiliated with this Center:

Rheumatology:

  • Kathryn Torok, MD
  • Margalit Rosenkranz, MD
  • Daniel Kietz, MD
  • Elaine Cassidy, MD
  • Abbe de Vallejo, PhD

Studies

Status

National Registry for Childhood Onset Scleroderma

Actively Recruiting

Development of Clinical Disease Outcome Measures with Biological Substudies for Localized Scleroderma (LOCUS-2)

Actively Recruiting

CARRA Registry

Actively Recruiting

Prospective Analysis of Skin Biopsies in Localized Scleroderma

Actively Recruiting

Inceptions Cohort for Juvenile Systemic Sclerosis (jSSc)

Actively Recruiting

Immunopathogenesis of Pediatric Rheumatic Diseases

Actively Recruiting

Localized Scleroderma Cutaneous Assessment Tool: Collection of Clinical Disease Scores

Closed to Enrollment/In Data Analysis

Development of Clinical Disease Activity Measures for Pediatric Localized Scleroderma

Closed to Enrollment/In Data Analysis

Quality of Life in Pediatric Localized Scleroderma

In Submission

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South Carolina

Medical University of South Carolina Scleroderma CenterCharleston

Medical University of South Carolina
96 Jonathan Lucas Street, Charleston, SC 29425
Appointments: (843) 792-9200
Physician Inquiries: Marianne Wittenmeyer (843) 792-9200; Chris Keller (843) 792-9200

Research Inquiries: Kelley Gibson, (843) 792-5920; Dana Rosson (843) 792-2014

Richard M. Silver, M.D.
Carol Feghali-Bostwick, Ph.D.
James Oates, MD
Diane Kamen, MD

Physicians Affiliated with this Center:
Rheumatology:

  • Richard M. Silver, M.D.
  • Edwin A. Smith, M.D.
  • Holly Mitchell, M.D.
  • Aiken McNair, P.A.
  • Faye Hant, D.O.
  • Corey Hatfield, D.O.

Gastroenterology:

  • Donald O. Castell, M.D.

Pulmonary Medicine/Pulmonary Hypertension:

  • J. Terrill Huggins, M.D.
  • Richard W. Rissmiller, M.D.
  • Charlie Strange, M.D., FCCP
  • Rahul Argula, MD

Cardiology:

  • Marian Taylor, M.D.
  • Eric Powers, M.D., FACC

Dermatology/Dermatopathology:

  • Richard M. Marchell, M.D.

Dental Surgery:

  • Michele Ravenel, D.M.D.

Hand Surgery:

  • M. Lance Tavana, M.D.

 

Studies

Status

LOTUSS

Active Recruiting

PRESS

Active Recruiting

Scleroderma : Cyclophosphamide or Transplantation (SCOT study)

Active

Tocz (Roche FaSScinate)

Active

MCRC Project 1

Active Recruiting

PHAROS Study

Active

RAPIDS 2 (Bosentan and Digital Ulcers)

Closed

BUILD (Bosentan Use In Interstitial Lung Disease)

Closed

Scleroderma Lung Study II

Active

DISTOL (Digital Ischemic Lesions in Scleroderma)

Closed

Dasatinibin (Scleroderma Pulmonary Interstitial Fibrosis)

Closed

Macitentan for the Treatment of Digital Ulcers in Systemic Sclerosis Patients

Closed

 

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Tennessee

University of Tennessee Scleroderma CenterMemphis

University of Tennessee Medical Group, Rheumatology
1325 Eastmoreland, Suite 365, Memphis, TN 38104; 7945 Wolf River Blvd, Suite 120, Germantown, TN 38138-1733
www.utmedicalgroup.com

Clinic Information: Adult patients seen with systemic scleroderma. Hours: 8 a.m. to 5 p.m. Monday through Friday .

Physicians Affiliated with this Center:

  • Arnold Postlethwaite, M.D. (research)
  • Debendra Pattanaik, M.D.

Appointments and Physician Inquiries: (901) 866-8809

Research Information: Contact Dr. Postlethwaite at (901) 448-5774

Studies

Status

Stem Cell Transplant Versus Cytoxan study

Closed

Oral Type I Bovine Collagen in Scleroderma

Closed

 

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Texas

University of Texas Houston Scleroderma CenterHouston

University of Texas Rheumatology Clinic
6410 Fannin, Suite 450, Houston, TX 77030
http://www.utphysicians.com/1177/rheumatology/

Clinic Information: Adult, systemic, localized. Call office for hours

Clinic Hours
Monday - Friday 8:00 AM – 5:00 PM

Appointments: (713) 486-3100

Participating Physicians:

  • Maureen Mayes, MD, MPH
  • Shervin Assassi, MD, MS
  • Martha Aguilar, MD
  • Jammie Barnes, MD
  • Binh Nguyen, MD
  • John Reveille, MD
  • Filemon Tan, MD, PhD
  • Noranna Warner, MD, PhD

Research Information Contacts: Ann Saulino, Senior Research Nurse, (713) 500-7118

Studies

Status

SCOT Study Scleroderma Cyclophosphamide or Transplantation

Active, filled

GENISOS (Longitudinal Study of Early Scleroderma)

Active

PHAROS ( Pulmonary Hypertension Assessment Registry of Scleroderma)

Active

Scleroderma Family Registry and DNA Repository

Active

LOTUSS - (An Open-Label, Randomized, Phase 2 Study of the Safety and Tolerability of Pirfenidone in Patients with Systemic Sclerosis-Related Interstitial Lung disease) or Pirfenidone in Scleroderma Lung disease

Active

ASC01 – Rituximab in SSc-Pulmonary Arterial Hypertension

Active

 

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Utah

University of Utah Scleroderma CenterSalt Lake City

University of Utah Scleroderma Center
50 North Medical Drive, Clinic 2
Salt Lake City, Utah 84132

Appointments:
801-581-7724 (specify Scleroderma Clinic)
Monday: 9 a.m. to 11 a.m.
Wednesday 9 a.m. to 2 p.m.
Thursdays: New Patients 11 a.m. to 1 p.m.  

Research Inquiries: 801-585-6468

Scleroderma Clinic Director: Tracy Frech, MD
 
Physicians Affiliated with this Center:

  • Rheumatology: Tracy Frech, M.D., M.S.; Allen Sawitzke, M.D.
  • Pulmonology, Pulmonary Arterial Hypertension: Nathan Hatton, M.D.; Boaz Markewitz, M.D.
  • Pulmonology, Interstitial Lung Disease: Mary Beth Scholand, M.D.
  • Dermatology, Chris Hansen, MD

Studies

Status

PHAROS (The Natural History and Outcome of Patients with Scleroderma at High Risk for or with Early Pulmonary Hypertension)

Recruiting

Genetic, Serologic, and Phenotypic Characterization of Scleroderma: 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

Recruiting

Scleroderma Lung Study 2: A multicenter trial of mycophenolate versus cyclophosphamide for treatment of scleroderma interstitial lung disease

Recruiting

ROCHE faSScinate WA27788 study for IL-6 treatment of skin thickening

Active

A Randomized, Double-blind, Placebo-Controlled, Phase II Multicenter Trial of a Monoclonal Antibody to CD20 (Rituximab) for the Treatment of Systemic Sclerosis-Associated Pulmonary Arterial Hypertension (SSc-PAH) (Protocol # ASC01)

Recruiting

Macitentan for the Treatment of Digital Ulcers in Systemic Sclerosis Patients

Recruiting

 

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Washington

Seattle

Seattle scleroderma centerVirginia Mason Medical Center
6th floor of Lindeman Building, 1100 9th Ave., Seattle, WA 98101
www.benaroyaresearch.org

Clinic Information: Patients seen with systemic and localized scleroderma. 8 a.m. to 5:30 p.m. Monday through Friday.

Physicians Affiliated with this Center:

  • Jane Buckner, M.D.
  • Jeff Carlin, M.D.
  • Pedro Mtrujillo, M.D.
  • Stanford Peng, M.D., Ph.D.
  • Kori Dewing, ARNP

Appointments: (206)-223-6824
Physician Inquiries: (206)-223-6824

Research Information: (206) 223-6836

Studies

Status

Raynaud’s Treatment Study (nitroglycerine gel in Raynaud's)

Recruiting

Scleroderma and Rheumatic Disease Registry and Blood Repository

Recruiting

SCOT (Scleroderma Cyclophosphamide or Transplantation

Recruiting

BUILD 2 Open-label Bosentan for Interstitial Lung Disease

Closed

Bovine Collagen in Scleroderma

Closed

Scleroderma Lung Study (funded by NIH)

Closed

For more information on studies: http://www.benaroyaresearch.org/clinical-trials/research-studies/category/17

The Scleroderma Clinic at the University of Washington

4245 Roosevelt Way NE 2nd floor
Seattle,WA 98105.

Physicians Affiliated with this Center:

  • Mark Wener, M.D.
  • Ganesh Raghu, M.D.

Clinic information: Referrals to the Scleroderma Clinic for consultation and/or management can be made by calling Kelly Smith at (206) 598-6285; or fax (206) 598-5646.

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Wisconsin

Milwaukee

Medical College of Wisconsin/Froedtert Hospital
Rheumatology Clinic
Specialty Clinics Building
9200 West Wisconsin Avenue
Milwaukee, WI 53226

Appointment scheduling (by physician referral only):  (414) 805 – 6633

New scleroderma patient evaluations on Wednesday afternoons
All forms of scleroderma treated/ adult patient only

Physician affiliated with this center: Mary Ellen Csuka, M.D.

Research Information: Marit Johnson, RN, Clinical Research Coordinator (414) 955 – 7022, mjohnson@mcw.edu

Studies

Status

Study of Pomalidomide (CC-4047) to Evaluate the Safety, Tolerability, Pharmacokinetics, Pharmacodynamics and Effectiveness for Subjects with Systemic Sclerosis with Interstitial Lung Disease:  www.sclerodermastudy.com

Active

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Rituximab:  A randomized, double-blind, placebo-controlled, Phase II multicenter trial of Rituximab for the treatment of systemic sclerosis-associated pulmonary arterial hypertension Back to top