Advocates on Steps of Congress 2013
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Alabama

Birmingham

University of Alabama at Birmingham – Rheumatology Clinic
2000 6th Ave South 3rd Floor Birmingham AL 35233
www.health.uab.edu

Phone: (205) 996-7438 (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: Martin Trojanowski, M.D.

Clinic contact: Bridget McIntyre, (205) 801-9031

Research Information:

Studies

Status

GRASP trial genome testing in African Americans

Recruiting

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Arizona

Mayo Clinic Scottsdale ArizonaScottsdale

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

www.mayoclinic.org/rheumatology-sct/

Contact Information for Appointments

Central Appointment Office (self-referred)
Phone: 480-301-1735 / 800-446-2279   Fax: 480-301-6780

Referring Physician Services (physician referred)
Phone: 480-301-7085 / 866-629-6362   Fax: 480-301-4071

Division of Rheumatology
Phone: 480-301-8368  (Appointment Information) Phyllis
Records fax: 480-301-9066

Clinic Information: The Mayo Clinic Arizona Scleroderma Program is directed by W. Leroy Griffing MD, Division of Rheumatology, who integrates the medical specialties of Mayo Clinic Arizona to provide as needed a timely, coordinated and comprehensive evaluation and treatment approach. Additional resources available as necessary may include Hand Surgery, Lung Transplant Surgery and Heart Transplant Surgery.  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.

Studies

Status

A Randomized, Double-Blind, Placebo-Controlled Phase II study to Investigate the Efficacy and Safety of Riociguat in Patients with Diffuse Cutaneous Systemic Sclerosis (Bayer 16277)

Recruiting

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California

Scleroderma Center at Stanford UniversityStanford-Redwood City

Stanford University Scleroderma Center, Stanford University Medical Center
450 Broadway St. Department of Dermatology, Pavilion B, 4th floor
Redwood City, CA 94063

Appointments: 650-723-6961

Physician Inquiries: 650-493-5000 x62042

Research Inquiries: 650-721-7147



Director:  Lorinda Chung, MD, MS
Associate Director: David Fiorentino, MD, PhD
Research Coordinators: Amanda Foster and Saranya Nandagopal

Physicians Affiliated with this Center:

  • Rheumatology:  Lorinda Chung, MD, MS/ Jison Hong, MD/ Janice Lin, MD
  • Gastroenterology: Linda Nguyen, MD/ Laren Becker, MD/ Nielsen Fernandez-Becker, MD
  • Pulmonary Medicine/Pulmonary Hypertension: Tushar Desai, MD/ Roham Zamanian, MD/ Mark Nicolls, MD
  • Cardiology: Francois Haddad, MD
  • Dermatology: David Fiorentino, MD, PhD/ Matthew Lewis, MD/ Howard Chang, MD, PhD
  • Hand Surgery: James Chang, MD

Studies

Status

PHAROS: Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma

Active, not recruiting

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

A Phase 2 Study to Evaluate Subcutaneous Abatacept vs. Placebo in Diffuse Cutaneous Systemic Sclerosis — A Double-Blind, Placebo-Controlled, Randomized Controlled Trial

Active recruiting

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

Active, not recruiting

Observational and Translational Study of Early Diffuse Cutaneous Systemic Sclerosis

Active recruiting

A Randomized, Double-Blind, Placebo-Controlled Phase II Study to Investigate the Efficacy and Safety of Riociguat in Patients With Diffuse Cutaneous Systemic Sclerosis (dcSSc)

Active recruiting

Safety, tolerability and efficacy of JBT-101 in Diffuse Cutaneous Systemic Sclerosis

Active recruiting

Scleroderma Center at San FranciscoSan Francisco

UCSF Scleroderma Center, University of California, San Francisco

400 Parnassus Avenue, Floor B-1
San Francisco, CA 94143

The UCSF Scleroderma Center evaluates and manages patients affected by the systemic and localized forms of scleroderma, Raynaud’s Phenomenon and other fibrosing skin disorders including eosinophilic fasciitis, scleromyxedema and scleroderma.

Contact Information for Clinical Appointments
Phone: 415-353-2497 (option #3)
Fax: 415-353-8463

Clinic Hours 
Monday - Friday, 8:00 AM - 4:00 PM

Participating Physicians

  • Francesco Boin, M.D., Director
  • Andrew J. Gross, MD

Other physicians affiliated with this center

  • Pulmonary Medicine/Interstitial Lung Disease: Jeffrey Golden, M.D., Paul Wolters, M.D.
  • Cardiology/Pulmonary Hypertention: Teresa DeMarco, M.D., Van Selby, M.D.
  • Dermatology: M. Kari Connolly, M.D., Anna Haemel, M.D. 
  • Gastroenterology: Najwa El-Nachef, M.D.
  • Hand Surgery: Lisa Lattanza, M.D. 

Research Coordinator

Vladimir Chernitskiy

 

Studies

Status

UCSF Scleroderma Cohort

Active recruiting

Genome Research in African American Scleroderma Patients (GRASP) Study - NIH/NHGRI supported to discover and study  genes associated with increased risk for scleroderma and its manifestations in African American  patients Active recruiting
Eular Scleroderma Trials and Research (EUSTAR) Open
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

Resources

Los Angeles

University of California Los Angeles Scleroderma Center

University of California, Division of Rheumatology
1000 Veteran Ave., Rehab Center Room 32-59, Box 951670, Los Angeles, CA 90095-1670
Telephone: (310) 825-2448 and (310) 825-4744
Fax: (310) 206-8606
Website: www.rheumatology.ucla.edu

Physician Affiliated with this Center:

Rheumatologists:

  • 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

Autologous Stem cell transplantation in patients Post-Initial transplant

Active

Observational trial of pts at risk for early pulmonary hypertension (PHAROS)

Active

Validation of Ultra-sound of the joints in SSc

Active

Randomized Control Trial of Riociguat for diffuse SSc

Active

Phase 1, placebo-controlled trial of a cannabinoid in diffuse SSc

Active

Randomized Control Trial of Abatacept in diffuse SSc

Active

Randomized Control Trial of Pamalidomide in SSc (follow-up only)

Active

Randomized Control Trial of Perfenidone in SSc (follow-up only) Active

Randomized Control Trial of Tocilizumab (follow-up only)

Active

Observational Trial of Quality of Life in SSc

Active

Observational Trial of Combined Response Index in SSc

Active

Randomized Control Trial of Mycophenolate vs Cyclophosphamide in SSc

Active

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Colorado

University of Colorado Scleroderma ProgramCO Jewish Health

CO Anschutz

Aurora/Denver

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

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. (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: University of Colorado: (720) 848-7700 or 720-848-4400

 

Studies Status

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

Closed

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

Closed

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

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

Closed

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: Kim Striegel, APRN (860) 679-2589 or Elena Breen (860) 679-2167

Studies

Status

A Randomized, Double-Blind, Placebo-Controlled Phase II Study to Investigate the Efficacy and Safety of Riociguat in Patients With Diffuse Cutaneous Systemic Sclerosis

Recruiting

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 Health Care Providers

  • 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)
  • Kristin Papu, PA-C (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)
  • Oana Zaha, MD (Rheumatology section)
Studies Status

High Dimensional Phenomics in Scleroderma Lung Involvement

Closed for new enrollment

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

(BEAT) A Multi-Center, Double-Blind, Randomized, Placebo-Controlled, Phase 3 Study to Assess the Efficacy and Safety of Oral BPS-314d-MR Added-On to Treprostinil, Inhaled (Tyvaso) in Subjects with Pulmonary Arterial Hypertension Actively recruiting
US-based, observational, drug registry of Opsumit (macitentan) new users in clinical practice Actively recruiting

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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. Walker, (202) 444-6200

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

Research Information: Carolyn Fridley, (202) 444-621,1 cef65@georgetown.edu; or Maia Zulmatashvili, (202) 444-6210, mz381@georgetown.edu

Name

Description

NCT Number

GU Study Coordinator

Scleroderma Patient Interaction Network (SPIN)

An online, suvey-based study designed to discover where scleroderma patients could use more support and serve as a way to develop online-based support mechanisms to support scleroderma patients world-wide

N/A

Carolyn Fridley: cef65@georgetown.edu

Genome Research in African American Scleroderma Patients (GRASP)

A genome-wide association study for African American Scleroderma Patients designed to identify novel genetic markers and inform future research and treatment for African American scleroderma patients

N/A

Carolyn Fridley: cef65@georgetown.edu

A Phase II Study to evaluate subcutaneous abatacept vs. placebo in diffuse cutaneous systemic sclerosis- a couble-blind, placebo-controlled, randomized controlled trial (ASSET)

Phase 2 weekly injection of Abetacept (co sponsored by BMS, U of Michigan and NIH) (vs placebo) in early disease, less than 2 years from first non Raynaud’s symptoms, with skin involvement on the arms or trunk.

NCT02161406

Carolyn Fridley: cef65@georgetown.edu

Prosepctive Registry of Early Systemic Sclerosis (PRESS) A prospective registry of early diffuse scleroderma patients designed to collect clinical data and biological specimens to inform and support future research in order to understand the natural hisotry of scleroderma N/A Carolyn Fridley: cef65@georgetown.edu
A Randomized, Double-Blind, Placebo-Controlled Phase II study to Investigate the Efficacy and Safety of Riociguat in Patients with Diffuse Cutaneous Systemic Sclerosis (Bayer 16277) Phase 2 world wide study by Bayer using Riociquat, an exciting new drug approved for pulmonary arterial hypertension that ALSO has impressive pre clinical anti-fibrotic effects. Again early disease, can be mild diffuse in order to prevent fibrosis, so early disease is KEY. NCT02283762 Maia Zulmatashvili: mz381@georgetown.edu
A Double-Blind, Placebo-Controlled Study of Intravenous Immunoglobulin Treatment for Skin Disease in Systemic Sclerosis (IVIG) A study investigating the use of IVIG in refractory diffuse scleroderma in patients who have failed to respond to other treatments. Diffuse SSc on methotrexate or cellcept and persistent skin , < 5 years of disease. NCT01785056 Maia Zulmatashvili: mz381@georgetown.edu
Scleroderma Treatment with Celution Processed Adipose Derived Regenerative Cells (STAR): A Randomized, Double-Blind, Placebo-Controlled Trial with Incomplete Crossover A study using a small amount of fat taken from your thighs or abdomen to treat hand dysfunction due to scleroderma. The fat tissue is treated using a new medical device and the purified solution which contains cells believed to have regenerative properties are injected into the patient's hands. NCT02396238 Carolyn Fridley: cef65@georgetown.edu

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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.
  • 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, Thursday, and Friday

Physician Affiliated with this Center:

  • Shiva Arami, M.D.
  • William Swedler, M.D.
  • Anjali Mehta, M.D.
  • Suncica Volkov, M.D.

Research Contact: Latriese Givens, lvs76@uic.edu

Clinic Registration: (312) 413-5569
Appointment Scheduling: (312) 413-5569
Physician Inquiries: (312) 355-5079

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

Tulane University School of Medicine - Tulane Lung Center
1430 Tulane Ave, 7th floor
504 988 8600
(ask for Anna or Alicia)
 
Southeast Louisiana Veterans Health Care System
1601 Perdido Street, New Orleans, LA 70112
(800) 935-8387
(ask for Dr. Saketkoo scheduling)
 
University Medical Center Comprehensive Pulmonary Hypertension Center
2025 Gravier St; New Orleans, LA 70112
504 903 4279
(ask for Avery or Ebone)
   
Hospitals served: Tulane University Medical Center, VA Interim Hospital, University Medical Center (public hospital, aka University Hospital, Charity Hospital and MCLNO)

  • Lesley Ann Saketkoo, MD, MPH – Director; Associate Professor of Medicine at Tulane University School of Medicine; Sections of Immunology and Pulmonary Medicine
  • Joseph A Lasky, MD, PhD - Pulmonary Medicine, Interstitial Lung Disease/Pulmonary Fibrosis 
  • Bennett de Boisblanc, MD - Pulmonary Medicine / Pulmonary Hypertension
  • Matthew Lammi, MD- Pulmonary Medicine / Pulmonary Hypertension
  • Shigeki Saito, MD - Pulmonary Medicine / Pulmonary Hypertension
  • Vjayendra Jaligam, MD - Cardiology
  • Abhishek Jaiswal - Cardiology
  • 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 -  Director of Therapeutic Wellness (Physical and Occupational Therapy)
  • Tracy LeGros, MD, PhD - Emergency Medicine and Wound Care, Hyperbaric Specialist
  • Erin Boh, MD - Dermatology

Studies

Status

Eular Scleroderma Trials and Research (EUSTAR)

Open

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

Open

Incidence, Prevalence of Systemic Sclerosis in the Louisiana and Gulf Area Study

Open

Patient Perspectives in Systemic Sclerosis Interstitial Lung Disease

Open

Patient Perspectives in Systemic Sclerosis Pulmonary Hypertension

Open

Patient Perspectives in Calcinosis

Open

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

Open

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

Endothelial Micro-particles in Systemic Sclerosis

Open

Sexual Dysfunction in Pulmonary Hypertension

Open

Multidimensional Fatigue In Pulmonary Hypertension

Open

Several current clinical trials in Pulmonary Hypertension

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., ScM Co-Director
  • Ami Shah, M.D., MHS
  • Zsuzsanna McMahan, M.D., MHS
  • Julie Paik, M.D., MHS

Clinical Appointments: Medical office coordinators at (410) 550-7715; Fax, (410) 550-1363; New patient requests/records faxed to 443-267-0090; scheduling office 443-997-1552

Research Information: Gwen Leatherman, Clinical Research Nurse Coordinator, (410) 550-8582, gleathe@jhmi.edu

Research interests: Raynaud’s Phenomenon, Scleroderma Lung Disease, Autoimmunity and Cancer, and Vascular Disease

Studies

Status

A Phase 2, Double-blind, Randomized Placebo-controlled Multicenter Study to Evaluate Safety, Tolerability, Efficacy, and Pharmacokinetics of JBT-101 in Diffuse Cutaneous Systemic Sclerosis

Active recruiting

Clinical Epidemiology of Lung Disease and Other Features of Scleroderma and Other Connective Tissue Diseases

Call for status

Studies of serum plasma factors in systemic sclerosis, Raynaud’s phenomenon and other connective tissue diseases

Call for status

Study of serum and plasma factors in systemic sclerosis and related conditions (control)

Call for status

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

Call for status

Double-Blind placebo controlled study of Intravenous Immunoglobulin treatment in skin disease in systemic sclerosis Active recruiting

Prospective Registry of Early Systemic Sclerosis, (PRESS) Phenotypic, Serologic, and Biomarker/Genetic Characteristics of Early Diffuse Cutaneous Systemic Sclerosis

Active recruiting
Johns Hopkins Scleroderma Center Cutaneous Tissue Repository Active recruiting
A double blind, randomized, placebo-controlled trial evaluating efficacy and safety of oral nintedanib treatment for at least 52 weeks in patients with Systemic Sclerosis associated interstital Lung Disease (SSc-ILD) Active recruiting
Scleroderma Treatment with Celution Processed Adipose Derived Regenerative Cells (STAR): A Randomized, Double-Blind, Placebo-Controlled Trial with Incomplete Crossover Active recruiting

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Massachusetts

Boston University Scleroderma CenterBoston

Boston University Scleroderma Program
Shapiro 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: Krista Krol-Buch (617) 638-4312
For trial-related inquiries: Fei-Ying Cheong, PhD, MA, (617) 638-4344

Scleroderma Specialists Affiliated with this Center

Rheumatology:
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

ASSET

Enrolling

C-82

Enrolling

RILONACEPT (IL-1-TRAP)

Enrolling

STAT

Enrolling

Rituximab in SSc-PAH

Enrolling

Arena (APD811-003)

Enrolling

ARROW 

Enrolling

LARIAT

Enrolling

MOTION

Enrolling

National Biobank for PAH Enrolling
PHAROS Enrolling
SCaR/CORT Enrolling
Fibroblast/Immune Cell Culture from Skin Enrolling

 



Scleroderma Program - Massachusetts General Hospital

55 Fruit St, Yawkey 2C-2100
Boston, MA 02114

Website: http://www.massgeneral.org/rheumatology/services/

Clinic Information: We see adult patients with morphea (localized scleroderma), systemic sclerosis and associated fibrosing conditions

Telephone Hours: 9 am - 4 pm Monday-Friday

Clinic Appointments by Referral Only: (T) 617-726-7938 (F) 617-643-1274

Physicians Affiliated with this Center:

  • Flavia Castelino, M.D, Program Director
  • Marcy Bolster, M.D.
  • Sara Schoenfeld, M.D.

Research Inquiries: 617-726-2792, adfernandes@mgh.harvard.edu (Ana Fernandes, coordinator)
Fax: 617-643-1274

Studies

Status

PRISM (Prospective Registry/Repository in Scleroderma at MGH)- Database and biorepository of patients with scleroderma at the MGH Scleroderma Program

Active, recruiting

Lysophosphatidic Acid (LPA) as a Biomarker in Scleroderma- evaluate whether LPA levels in the blood and skin can help us understand disease progression in scleroderma

Active, recruiting

ASSET (Abatacept Systemic SclErosis Trial, Phase II trial)

Active, recruiting

Prospective Registry in Early Systemic Sclerosis (PRESS)- A collaborative, multi-center database of patients in the early stages of scleroderma.
Active, recruiting
Scleroderma Clinical Trials Consortium (SCTC) Calcinosis Working Group- A collaborative, multi-center database of patients with scleroderma and calcinosis.

Active, recruiting

Nintedanib in Scleroderma Lung Disease (Phase III trial)

Active, recruiting

 

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Michigan

University of Michigan Scleroderma CenterAnn Arbor

University of Michigan, Scleroderma Program 1500 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
ASSET website: http://umich.edu/~asststdy/
Scleroderma Program Website: http://www.med.umich.edu/scleroderma/

Scleroderma Program Manager: Ann Murphy (734)-232-2104

Research Inquiries: Jennelle Shaw (734) 936-4555, Jennifer Serrano (734) 232- 2119 , Aaron Rankin (734)- 763-4866

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

Studies

Status

NextMed Raynauds

Enrolling

Rilonacept

Enrolling

ASSET

Enrolling

PRESS

Enrolling

RISE

Enrolling

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Minnesota

Minneapolis

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

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

Clinic Scheduling Phone: (612) 626-6100, Fax: (612) 626-9944

Physicians associated with the facility

  • Gastroenterology: Dr. Jose Vega-Peralta,  Dr. Alexander Khoruts, Dr. Mustafa Arain, Savanna Borne, MSN
  • Pulmonary: Dr. Hyun Kim,  Dr. Craig Henke
  • Cardiology:  Dr. Mark Pritzker,  Dr. Thenappan Thenappan
  • Rheumatology: Dr. Jerry Molitor

RN Care Coordinator: Lee Anderson-she can be reached at the clinic number.

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)

CLOSED

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 - CLOSED to enrollment

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)

CLOSED

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

ASCO-1 : " A Randomized, Double-Blind, Placebo-Controlled, Phase II Multicenter Trial of a Monoclonal Antibody to CD20 (Rituzimab) for the Treatment of Systemic Sclerosis"The primary study objective  is to compare patients with SSc-PAH treated with rituximab to those on placebo for change in exercise capacity, as determined by  the 6MWT. The secondary objectives are to compare treatment groups for other measures of disease progression and to determine whether the effects on clinical disease progression are paralleled by changes in selected biomarkers. Safety and tolerability of rituximab for the treatment of SSc-PAH in patients currently receiving stable background medical treatment will be assessed. Funded by NIH, DAIT, & NIAID.(IRB # 1205M13701)

ACTIVELY ENROLLING

Additional studies are currently in process of Regulatory Review.

 

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New Hampshire

Lebanon, NH

Dartmouth Hitchcock Medical Center
1 Medical Center Dr.
Lebanon NH 03756

Phone: 603-650-8622
Fax: 603-650-4961

Clinic hours are 8am-5pm
Appointments are by referral only
Treats adults and children and all forms of the disease, localized and systemic sclerosis.

Website:: http://med.dartmouth-hitchcock.org/rheumatology.html

Physicians affiliated with this center:

Rheumatology: Nicole Orzechowski, D.O. and Daniel Albert, M.D.
Pulmonology: Alex Gifford, M.D. and Richard Enelow, M.D.
Dermatology: Dorothea Barton, M.D.
Gastroenterology: Brian Lacy, M.D., PhD
Cardiology: Edward Catherwood, M.D. and Bruce Andrus, M.D.
Vascular Surgery: Michael Matthew, M.D.
Basic Science: Michael L. Whitfield, Ph.D.

Studies

Status

Molecular Characterization of Multi-Organ Involvement in Patients with Systemic Sclerosis

Active

 

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New Jersey

Hackensack

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

Phone: 551-996-5306 (appointments and information- by referral only)
Fax: 201-996-9815

Clinic Information:

Patients who have localized scleroderma (circumscribed morphea, linear scleroderma, other subtypes), systemic sclerosis, or other sclerosing diseases are seen by referral. Practice is limited to patients from newborn to 22 years of age.

Appointments are held in the Pediatric Rheumatology offices on the 3rd floor of the WFAN-Imus Pediatric Building.
Hours: Monday, Wednesday, Thursday, 9 AM-5 PM

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
  • Julie Schaffer, MD

Radiology:

  • Melissa Liebling, MD
  • Mike McGuire, MD

Clinic contact: Johnslyn Rochester

Studies Status
Identifying Juvenile Scleroderma (Localized and Systemic) Immunophenotype Subsets Actively Recruiting
Development of Clinical Disease Outcome Measures with Biological Substudies for Localized Scleroderma (LOCUS-2) Actively Recruiting
Juvenile Localized Scleroderma Consensus Treatment Plan pilot study Closed to enrollment, in long term follow-up and data analysis
Legacy CARRA Registry Closed to enrollment, in data analysis
Development of Clinical Disease Outcome Measures with Biological Substudies for Localized Scleroderma (LOCUS-1) 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

The natural history and outcome of patients with scleroderma at high risk for or with early pulmonary hypertension  (PHAROS)

Closed

A Randomized, Double-Blind, Placebo-Controlled Phase II Study to Investigate the Efficacy and Safety of Riociguat in Patients with Diffuse Cutaneous Systemic Sclerosis (dcSSc)

Recruiting

Genome Research in African-American Scleroderma patients (GRASP)

Recruiting

A phase 2 study to evaluate subcutaneous abatacept vs. placebo in diffuse cutaneous systemic sclerosis – a double-blind, placebo-controlled, randomized controlled trial  (ASSET)

Recruiting

A Phase 2, Double-blind, Randomized, Placebo-controlled Multicenter Study to Evaluate Safety, Tolerability, Efficacy, and Pharmacokinetics of JBT-101 in Systemic Sclerosis

Pending

Cytori STAR Trial. Scleroderma Treatment with Celution Processed Adipose Derived Regenerative Cells (STAR):  A Randomized, Double‐Blind, Placebo‐Controlled Trial with Incomplete Crossover

Recruiting

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New York

Albany

Steffens Scleroderma Center

Albany Steffans
Saratoga Steffans

Albany Office: 4 Tower Place, 8th Floor, Albany, New York 12203

Saratoga Office: 6 Care Lane, Saratoga Springs, New York 12866

Website: https://portal.tcfr-ny.com/portal/default.aspx

Clinic Information: Adolescent and adult patients with localized or systemic scleroderma. Hours: Tuesdays in Albany and Thursdays in Saratoga

Physicians Affiliated with this Center:

  • Lee Shapiro, M.D.
  • Axia Toledo-Garcia, M.D.
  • Jessica Chapman, M.D.

New Patient Referrals and Appointments:

Appointments are available in either the Albany or Saratoga office. Please direct all requests for appointments to: 

Mackenzie Rouleau – New Patient Coordinator
6 Care Lane, Saratoga Springs NY 12866
Phone: (518) 584-4953
Direct Fax: (518) 533-1369
mrouleau@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.

Research Information:  Clinical Research Coordinators: Roberta Lukasiewicz (rlukasiewicz@joint-docs.com) and Heather Sickler (hsickler@joint-docs.com) or call (518) 584-4953 and ask to be connected

Studies

Status

VASCANA (Topical Therapy for Raynaud’s)

Open

PHAROS (Observational Study of Natural History of Pulmonary Hypertension)

Closed

SCOT Study (Scleroderma Cyclophosohamide Or Transplantation) 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
865 Northern Blvd, Suite 302 Great Neck, NY 11021

Clinic Information: Adult patients seen with systemic and localized scleroderma
questions/appointments: contact Jessica Christian at 516-708-2546

General information (516) 708-2550

(516) 708-2557 (Research Coordinator, Michelle Kong)

Physicians Affiliated with this Center:

Primary Physician Contact:  Sonali Narain, MD

  • Richard Furie, MD
  • Galina Marder, MD
  • Maria Louise Barilla-LaBarca, MD
  • Diane Horowitz, MD
  • Elena Katzap, DO
  • Christine Stamatos, NP

Studies

Status

PHAROS: Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma

Recruiting

New York City

hospital special surgery scleroderma

HSS, Scleroderma, Vasculitis, & Myositis Center
The Department of Medicine/Division of Rheumatology
The Hospital for Special Surgery
535 East 70th Street
NY, NY, 10021
212-774-2048
212-774-2358 fax

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, Director
  • Dr. Jessica Gordon
  • Dr. Lindsay Lally

Appointments: Ebony Jackson, (212) 606-1173, Stephanie Hasher 212-774-2434

Physician Inquiries: Dr. Robert Spiera, (212) 774-2048; Dr. Jessica Gordon, (212) 606-1173; Dr. Lindsay Lally, (212) 774-2434

Research Information: Eliza Pelrine, (212) 774-2123; or Chris Hatzis, (212) 774-7194, Emily Bakaj (212) 774-7620

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, fully enrolled

 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

Safety, Tolerability, Efficacy, and Pharmacokinetics of JBT-101 in Systemic Sclerosis
This study is being done to test the safety, tolerability, and efficacy of JBT-101 in the treatment of patients diagnosed with diffuse cutaneous systemic sclerosis. JBT-101 is a synthetic cannabinoid (CB) agonist, with 12 times greater affinity for the CB type 2 receptor than the CB type 1 receptor. As a result, JBT-101 activates the endocannabinoid system to resolve inflammation, and has little to no psychotropic activity.  Participants will be randomized in a 2:1 ratio to either receive JBT-101 in one of three dosing regimens, or to receive placebo. Patients will receive active treatment for 85 days, and then be followed for an additional 28 days. A total of 36 participants are expected to enroll in the study, with approximately 8 patients expected to be enrolled at Hospital for Special Surgery.

Active, recruiting

A Randomized, Double Blind, Placebo Controlled Trial of Topical C-82 in Systemic Sclerosis:  A Phase I/II Biomarker and Safety Trial
This study aims to determine the safety and tolerability of topical C-82 (a WNT-inhibitor) on the forearms of patients with scleroderma. Participants will be randomized to apply placebo gel to one arm and active C-82 gel to the other daily for 4 weeks. The primary outcome will be changes in skin biomarkers over the course of treatment, but modified Rodnan skin score and patient-reported outcomes will also be evaluated.
Active, recruiting

 Prospective Registry of Early Systemic Sclerosis (PRESS)  
This registry aims to better understand early diffuse systemic sclerosis by capturing clinical data, basic science markers, and candidate genes from patients. All patients that were diagnosed with diffuse scleroderma in the past two years and are 18 years or older are eligible to be enrolled in this registry. Study visits will occur approximately every 6 months and will involve questionnaires, a physical examination, and blood draws for research purposes.

Active, recruiting

 

nyc columbia center.jpgColumbia University Medical Center/New York-Presbyterian Hospital Scleroderma Program
Herbert Irving Pavilion, 2nd Floor
161 Fort Washington Avenue
New York, NY  10032

Telephone: (212) 305-4308
Fax: (212) 304-6610

Program Director: Elana J. Bernstein, MD, MSc

Research coordinator: Rachel Broderick
Telephone: (212) 342-2713
Email: rb3173@cumc.columbia.edu


Clinic information: Adult and pediatric patients with systemic and localized scleroderma
Hours: Monday through Friday 9 AM to 5 PM
Appointments: (212) 305-4308
Physician inquiries: (212) 305-4308
Research inquiries: (212) 342-2751
http://rheumatologyatcolumbia.org/

Physicians Affiliated with this Center:

  • Rheumatology: Elana J. Bernstein, MD, MSc
  • Pediatric Rheumatology: Lisa Imundo, MD
  • Pulmonology/Interstitial Lung Disease: Nina Patel, MD
  • Pulmonology/Lung Transplantation: Selim Arcasoy, MD, and David Lederer, MD, MS
  • Pulmonary Hypertension/Cardiology: Erika Berman-Rosenzweig, MD, and Jennifer Haythe, MD
  • Dermatology: Ali Jabbari, MD, PhD
  • Pediatric Dermatology: Maria C. Garzon, MD, Kimberly Morel, MD, and Christine Lauren, MD
  • Gastroenterology: David D. Markowitz, MD, and Victoria Sheen, MD
  • Medical Nutrition: David S. Seres, MD, ScM, PNS

Studies

Status

Prospective Registry of Early Systemic Sclerosis (PRESS), Phenotypic, Serologic, and Biomarker/Genetic Characteristics of Early Diffuse Cutaneous Systemic Sclerosis

Active, Recruiting

A phase II study to evaluate subcutaneous abatacept vs. placebo in diffuse cutaneous systemic sclerosis—a double-blind, placebo controlled, randomized controlled trial (ASSET)

Active, Recruiting

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

A Phase II, randomized, double-blind, placebo-controlled, parallel-group, multicenter trial to evaluate the efficacy and safety of abituzumab in subjects with systemic sclerosis-associated interstitial lung disease (SSc-ILD) Active, Recruiting
A double blind, randomized, placebo-controlled trial evaluating efficacy and safety of oral nintedanib treatment for at least 52 weeks in patients with ‘Systemic Sclerosis associated Interstitial Lung Disease’ (SSc-ILD) 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: Sonya Cameron (919) 684-4499

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: 419-383-3627

Clinic Information: Adult, adolescent and pediatric patients with systemic and localized scleroderma are seen within one week of requested appointment. The center’s hours are between 9:00 a.m. and 5:00 p.m. Monday through Friday.

Professionals Affiliated with this Center:

  • Bashar Kahaleh, M.D. Rheumatology.
  • Nezam Altorok MD. Rheumatology.
  • Vivek Nagaraja, MD. Rheumatology.
  • Samer Khoury, M.D. Pulmonary hypertension.
  • Fadi Safi, M.D. Interstitial lung disease.
  • Ali Nawras, M.D., Gastroenterology, motility disorder
  • Martin C. Skie, MD, Orthopedics: Hand and Microsurgery.
  • Deepak Maholtra , M.D., Ph.D. Nephrology.
  • Yongqing Wang, Ph.D. Basic research
  • Jennifer Gelmore, R.N. Research coordinator.
  • Jennifer Krzyston, R.N. Staff nurse
  • Oralia Hensley, administrative assistant

The center was established in 1992; currently we follow an approximately 130 SSc patients who are evaluated on regular basis. 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.

Closed

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. Closed
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
211 South 9th Street Suite 600, Philadelphia, PA  19107
833 Chestnut Street, Suite 740, Philadelphia, PA  19107
(Clinical Offices)
Suite 509, Bluemle Life Sciences Building
(Research Laboratories)

Appointments: 215-955-8430*
Physician Inquiries: 215-503-5042 / 215-955-1410
Research Inquiries: 215-5955-8405
*If an earlier appointment is needed please talk with our office manager, Jennifer Meuser.

Sergio A. Jimenez, M.D., M.A.C.R., Director
Fabian A. Mendoza, M.D., F.A.C.R., Associate Director
Marsha Simmons RN; Research Coordinator

Physicians Affiliated with this Center:

Rheumatology: 215-955-8430

  • Fabian A Mendoza, 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:

  • Jason Lee, M.D
  • Mathew Keller, M.D.

Dermatopathology

  • Jason Lee, M.D

Dental Surgery

  • Niles Nicolo, D.D.S.

Hand Surgery

  • Lee A. Osterman, M.D.

Studies

Status

Nintedanib versus placebo in Systemic Sclerosis associated interstitial lung disease. Planning to start enrollment Feb 2016
Evaluation of Abatacept versus placebo in early rapidly progressive Systemic Sclerosis. Planning to start enrollment Feb 2016
A prospective observational study of mycophenolate treatment for Scleroderma. Actively enrolling
Tocilizumab vs Placebo in patients with Systemic Sclerosis (Phase III) 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 Gastrointestinal 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:

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

Genome Research in African American Scleroderma Patients (GRASP) Study

Actively Recruiting

Scleroderma Clinical Repository (SCAR Study)

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 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:

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

New Patient Appointments: Jennifer Peat (412) 692-2738

Return Patient Appointments: (412) 647-6700

Specialists:

  • Pulmonary arterial hypertension - Drs. David Ishizawar, Marc Simon, Michael Mathier, Gavin Hickey *** Pulmonary Hypertension Clinic (877) 744-8762
  • ILD - Drs.  Kevin Gibson,  Daniel Kass, Kristen Veraldi, Jared Chiachiaro *** Simmons ILD Center  (412) 648-6161
  • GI - Drs.  Klaus Bielefeldt, Kenneth Fasanella ***Center for digestive diseases (412) 647-8666
  • Motility/Upper GI/Malnutrition - Dr. Klaus Bielefeldt  ***Center for digestive diseases (412) 647-8666
  • Renal crisis - Dr. Kevin Ho ***UPMC Kidney Clinic (412) 802-3043


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

PHAROS – Pulmonary Hypertension Assessment Registry of Scleroderma

Actively Recruiting

PRESS Registry

Actively Recruiting

Rituximab (Rituxan) Study for Scleroderma Pulmonary Hypertension

Actively Recruiting

TAMER- The Effect of Atorvastatin on Endothelial Function and Raynaud’s Phenomenon in Diffuse Scleroderma

Actively Recruiting

Cream in Subjects with Raynaud’s Phenomenon Secondary to Scleroderma

Avticely Recruiting

ASSET-  To Evaluate Subcutaneous Abatacept vs. Placebo in Diffuse Cutaneous Systemic Sclerosis

Actively Recruiting
JBT-101-To evaluate safety, tolerability, efficacy and pharmacokinetics of JBT-101 in diffuse cutaneous systems sclerosis. 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
Nicole Hershey, Research Coordinator
Archana Marathi, 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

Observational Study for Pediatric Rheumatic Diseases: The 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

Closed to Enrollment/In Data Analysis

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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: Shannon Gray (843) 792-9200

Research Inquiries: Kelley Gibson, (843) 792-5290; Dana Rosson (843) 792-2014

Richard M. Silver, M.D.
Carol Feghali-Bostwick, Ph.D.
Edwin A. Smith, M.D.
Galina Bogatkevich, Ph.D.

Physicians Affiliated with this Center:
Rheumatology:

  • Melissa Cunningham M.D., Ph.D.
  • Gary Gilkeson, M.D.
  • Faye Hant, D.O.
  • Diane Kamen, M.D.
  • James Oates, M.D.
  • Aiken McNair, P.A.
  • Holly Mitchell, M.D.
  • Eric Zollars, M.D., Ph.D.

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

A Phase II Study to Evaluate Subcutaneous Abatacept vs. Placebo in Diffuse Cutaneous Systemic Sclerosis: a Double-Blind, Placebo-Controlled, Randomized Controlled Trial (ASSET)

Recruiting

A Phase II, Double-Blind, Randomized, Placebo-Controlled Multicenter Study to Evaluate Safety, Tolerability, Efficacy, and Pharmacokinetics of JBT-101 in Diffuse Cutaneous Systemic Sclerosis

Not yet recruiting

Efficacy and Safety of Riociguat in Patients with Systemic Sclerosis

Recruiting

Multidisciplinary Clinical Research Center for Rheumatic Diseases in African Americans (MCRC)

Recruiting

Prospective Registry of Early Systemic Sclerosis, (PRESS) Phenotypic, Serologic, and Biomarker/Genetic Characteristics of Early Diffuse Cutaneous Systemic Sclerosis

Recruiting

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

Recruiting

Safety and Suitability of Dabigatran to Inhibit Thrombin in Systemic Sclerosis

Not yet recruiting

Taking charge of systemic sclerosis: Improving patient outcomes through self-management (Phase II)

Not yet recruiting

 

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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 Scleroderma Clinic
Frank C. Arnett Center for Autoimmunity
6410 Fannin, Suite 450, Houston, TX 77030
https://www.utphysicians.com/specialty/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
  • Gloria Salazar, MD, MS

Research Information Contacts: Patricia Gonzales, LVN, (713) 500-7118 and Samuel Theodore 713-500-6859

Studies

Status

SCOT Study Scleroderma Cyclophosphamide or Transplantation

Active, filled

GENISOS (Longitudinal Study of Early Scleroderma)

Active, enrolling

Scleroderma Family Registry and DNA Repository Active, enrolling

ASSET (Study of Abatacept in Early SSc)

Active, enrolling

RISE-SSc (Study of Riociquat in Early SSc)

Active, enrolling

ASC01 – Rituximab in SSc-Pulmonary Arterial Hypertension

Active, enrolling

STAR study (Cytori) Active, enrollment to start in early 2016
STAT study – Stem Cell Transplant study in early diffuse scleroderma Active, enrolling
FocuSSced Study – early SSc lung disease Enrollment to start first quarter 2016
SenScis Study – early SSc lung disease Enrollment to start first quarter 2016

 

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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

A Randomized, Double-Blind, Placebo-Controlled Phase II Study to Investigate the Efficacy and Safety of Riociguat in Patients with Diffuse Cutaneous Systemic Sclerosis (dcSSc).

Not yet enrolling

A phase 2 study to evaluate subcutaneous abatacept vs. placebo in diffuse cutaneous systemic sclerosis—a double-blind, placebo-controlled, randomized controlled trial.

Not yet enrolling

A PILOT STUDY TO ASSESS THE EFFICACY AND SAFETY OF RIOCIGUAT VS. PLACEBO IN SCLERODERMA-ASSOCIATED DIGITAL ULCERS.

Not yet enrolling

Validation of Outcome Measures in Scleroderma-Associated Gastrointestinal Involvement Registry.

Not yet enrolling

The Scleroderma Patient-Centered Intervention Network (SPIN) Cohort.

Recruiting

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Washington

Seattle

Seattle Children’s Hospital
Rheumatology Clinic
MA 7.110
4800 Sand Point Way NE
Seattle, WA  98105 

http://www.seattlechildrens.org/clinics-programs/rheumatology/

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

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

Appointments: (206) 987-2057

Participating Physicians:

  • Anne M. Stevens, MD, PhD (Rheumatology)
  • Sarah Ringold, MD (Rheumatology)
  • Jennifer Soares, MD (Pulmonology)
  • Ramesh Iyer, MD (Radiology)
  • Margaret Rosenfeld, MD (Pulmonology)
  • Heather Brandling-Bennett, MD (Dermatology)
  • Lusine Ambartsumyan, MD (Gastroenterology)
  • Ann Woolfrey, MD (Hematology/Oncology)
  • Gail Deutsch, MD (Pathology)

Research Information Contacts: Lucas Reichley (206) 987-3253

Studies Status
Genetic Associations in Juvenile Systemic Sclerosis Recruiting
Early detection of SSc interstitial lung disease. Active, not recruiting
Treatment of early jSSc pulmonary fibrosis. Active, not recruiting
Stem cell transplantation for refractory jSSc. Recruiting
Classification and Outcomes Measures for jSSc. Active, not recruiting

 

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 patients 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 or (414) 955-7029

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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