Advocates on Steps of Congress 2013
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Arizona

Mayo Clinic Scottsdale ArizonaScottsdale

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

Mayo Clinic’s Scleroderma program in Arizona is the only site in the southwestern United States dedicated to scleroderma treatment and advanced research to address the unmet needs of those living with this illness.

Under the direction of W. Leroy Griffing, M.D., Mayo Clinic’s Chair of Rheumatology in Arizona, a comprehensive evaluation is conducted, tailored to a patient’s individual needs. Initial testing and consultations with the program’s multidisciplinary team are typically accomplished in less than 5 days.

As scleroderma is a disease that affects patients in diverse ways, Mayo’s specialists work together on a treatment plan, providing integrated care that spans a variety of specialties including rheumatology, dermatology, gastroenterology, pulmonology, cardiology, physical therapy and surgery, depending on the patient’s needs.

Mayo Clinic’s specialists continue to advance the study of scleroderma by actively researching potential new treatment methods.

Mayo Clinic Arizona was one of 26 national sites that participated in the National Institutes of Health (NIH) sponsored Scleroderma: Cytoxan Or Transplant (SCOT) study which compared autologous stem cell transplant with monthly high dose IV Cytoxan for one year in scleroderma with severe interstitial lung disease.

New scleroderma trials are expected to open at Mayo Clinic’s Arizona campus in 2018.

Contact Information for Appointments

Central Appointment Office (self-referred)
Phone: 480-301-8484, 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)
Records fax: 480-301-9066

Clinic hours: Monday - Friday 7:30 a.m. to 5 p.m.

Studies Status
New clinical trials are expected to open in 2018

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California

Scleroderma Center at Stanford UniversityStanford-Redwood City

Stanford University Scleroderma Center,
Stanford University Medical Center

Broadway St.
Department of Dermatology,
Pavilion B, 4th floor
Redwood City, CA  94063

Appointments: (650) 723-6961

Physician Inquiries: (650) 736-0727
Research Inquiries: (650) 725-4612

Director:  Lorinda Chung, M.D., M.S.
Associate Director: David Fiorentino, M.D., Ph.D.
Research Coordinators: Joel Nicholus and Marianna Stark

Physicians Affiliated with this Center:

  • Rheumatology:  Lorinda Chung, M.D., M.S., Jison Hong, M.D., Janice Lin, M.D., Robert Fairchild, M.D., Ph.D.
  • Gastroenterology: John Clarke, M.D., Linda Nguyen, M.D., Laren Becker, M.D., Nielsen Fernandez-Becker, M.D.
  • Pulmonary Medicine/Pulmonary Hypertension: Rishi Raj, M.D., Joshua Mooney, M.D., Paul Mohabir, M.D., Tushar Desai, M.D., Roham Zamanian, M.D., Mark Nicolls, M.D.
  • Cardiology: Francois Haddad, M.D.
  • Dermatology: David Fiorentino, M.D., Ph.D., Matthew Lewis, M.D., Howard Chang, M.D., Ph.D.
  • Hand Surgery: James Chang, M.D.

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, not recruiting

Outcomes and Clinical Biomarkers for Scleroderma

Active recruiting

A Pilot Study to Evaluate the Safety and Efficacy of Oral Treprostinil for the Prevention of Calcinosis Progression

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, not recruiting

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

Active recruiting

SENSCIS: Safety and Efficacy of Nintedanib in 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: 415-353-4403
Fax: 415-353-8463

Clinic Hours 
Wednesday, 8:00 AM - 4:00 PM

Thursday, 8:00 AM - 1:00 PM

Participating Physicians

  • Francesco Boin, M.D., Director

Other physicians affiliated with this center

  • Pulmonary Medicine/Interstitial Lung Disease: Paul Wolters, M.D., Hal Collard, M.D.
  • Lung Transplant Program: Steven Hayes, M.D., Jeffrey Golden, M.D., Rupal Shah, M.D.
  • Cardiology/Pulmonary Hypertention: Teresa DeMarco, M.D., Van Selby, M.D., Munir Janmohamed, M.D.
  • Dermatology: M. Kari Connolly, M.D., Anna Haemel, M.D. 
  • Gastroenterology: Najwa El-Nachef, M.D.
  • Nephrology: Elaine Ku, M.D.
  • Hand Surgery: Lisa Lattanza, M.D. 

Research Coordinator

Brynn Kron

 

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
SENSCIS- Safety and Efficacy of Nintedanib in Systemic SClerosIS: A Phase III, Multicenter, Randomized, Double-Blind, Placebo-Controlled Study to Assess the Efficacy and Safety of Nintedanib versus Placebo in Patients with Scleroderma and Interstitial Lung Disease (SSc-ILD). 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, CO  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 a.m. to 5 p.m.
Contacts: University of Colorado: (720) 848-7700 or (720) 848-4400

For anyone who may be interested in participating in any clinical studies, please contact Mallary Crow-Adams, (303) 724-8403 or mallary.crowadams@ucdenver.edu

A Multicenter, Randomized, Double-Blind, Placebo-Controlled Phase 3 Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis 

Open

Scleroderma Lung Study III (SLS III): Combining the anti-fibrotic effects of Pirfenidone (PFD) with Mycophenolate (MMF) for treating scleroderma related interstitial lung disease

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

Open

 

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Connecticut

Farmington Connecticut Scleroderma CenterFarmington

UConn Health
Outpatient Pavilion

263 Farmington Avenue
Farmington, CT  06030

Website: https://health.uconn.edu/msi/clinical-services/rheumatology/

Contact Information

Appointments: 
For more information or to make an appointment, call 860-679-2160 or 800-535-6232

Office Hours:
8 a.m. to 4:30 p.m. Monday through Friday

Rheumatologists associated with this center:
• Santhanam Lakshminarayanan, M.D.
• Ranadeep R. Mandhadi, M.D.
• William E. Traverse, M.D., FACR
• Kim Striegel, FNP-C, APRN
 
The Rheumatology Center in the UConn Musculoskeletal Institute at UConn Health has nationally recognized experts in the diagnosis and treatment of connective tissue disorders like rheumatoid arthritis, lupus, scleroderma, Sjogren’s syndrome, and anti-phospholipid syndrome.

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, R.N., B.S.N.
Research Nurse
Email: donna.carrano@yale.edu
Phone: (203) 737-5061
Fax: (203) 785-4787

Physicians & Affiliated Health Care Providers

  • Danielle Antin-Ozerkis, M.D. (Pulmonary, Critical Care, & Sleep Medicine)
  • Richard Bucala, M.D., Ph.D. (Rheumatology, Epidemiology, and Pathology)
  • Lenore Buckley, M.D., M.P.H. (Rheumatology section)
  • Shawn E. Cowper, M.D. (Dermatology & Pathology)
  • Joseph Craft, M.D. (Rheumatology section)
  • Wassim H. Fares, M.D., M.Sc (Pulmonary, Critical Care, & Sleep Medicine)
  • Mridu Gulati, M.D. (Pulmonary, Critical Care, & Sleep Medicine)
  • Kristin Papu, PA-C (Pulmonary, Critical Care, & Sleep Medicine)
  • Kevan Herold, M.D. (Rheumatology section)
  • Erica Herzog, M.D. (Pulmonary, Critical Care, & Sleep Medicine)
  • Insoo Kang, M.D. (Rheumatology section)
  • Oana Zaha, M.D. (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 Hospital

Office Address
Department of Rheumatology, Immunology & Allergy
3800 Reservoir Road, NW
3PHC, Suite 3004E
Washington, DC 20007

Clinical Address
Georgetown University Hospital
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.

Clinic 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: Sabrina Elliott, (202) 444-6210, se510@georgetown.edu; or Maia Cecire, (202) 444-6200, mz381@georgetown.edu

Name Description NCT Number GU Study Coordinator
Scleroderma Patient Interaction Network (SPIN) An online, survey-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 Sabrina Elliott
(202) 444-6210
se510@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 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
A Phase II Study to evaluate subcutaneous Abatacept vs. Placebo in diffuse cutaneous systemic sclerosis- a double-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 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
Prospective 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 history of scleroderma N/A Sabrina Elliott
(202) 444-6210
se510@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 worldwide 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 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
A prospective study to identify risk factors for progressive calcinosis in patients with systemic sclerosis: a scleroderma clinical trials consortium study (Calcinosis) A Prospective Study to Identify Risk Factors for Progressive Calcinosis in Patients with Systemic Sclerosis NA Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
A Pilot Study to Assess the Efficacy and Safety of Riociguat vs. Placebo in Scleroderma Associated Digital Ulcers (RESCUE) Active, open to enrollment. The primary objective of this study is to provide preliminary data on the efficacy safety of Riociguat administered 3 times daily (TID) in comparison to placebo in patients with scleroderma-associated digital ulcers. Eligibility based on active digital ulcers. NCT02915835 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
A Study of the Efficacy and Safety of Bardoxolone Methyl in Patients with Connective Tissue Disease-Associated Pulmonary Arterial Hypertension (CTD-PAH) (Catalyst) Active, open to enrollment, This study assesses the safety and efficacy of Bardoxolone methyl relative to placebo in patients with connective tissue disease-associated pulmonary arterial hypertension to determine the recommended dose range and evaluate the change from baseline in 6-minute walk distance (6MWD) following 24 weeks of study participation. NCT02657356 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
Efficacy and Safety of SAR156597 in the treatment of diffuse cutaneous systemic sclerosis (dcSSc): A randomized, double-blind, placebo-controlled, 24 week, proof of concept study (Sanofi ACT14604) Active, open to enrollment. This is a skin study, main objective is to evaluate, the efficacy of SAR156597 administered subcutaneously for 24 weeks on skin fibrosis in patients with dcSSc. NCT02921971 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
A Multicenter, Randomized, Double-Blind, Placebo-Controlled Phase 3 Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis (Corbus) Upcoming study, assessing the efficacy and safety of Lenabasum for the treatment of diffuse cutaneous systemic sclerosis  NCT03398837 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
Scleroderma Lung Study III: Combining the anti‐fibrotic effects of Pirfenidone (PFD) with mycophenolate (MMF) for treating scleroderma‐ related interstitial lung disease (SLS III) Starting early March, A Phase II multi-center, double-blind, parallel group, randomized and placebo-controlled clinical trial addressing the treatment of patients with active and symptomatic Scleroderma-related interstitial lung disease (SSc-ILD). NCT03221257 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
Evaluation of Brentuximab Vedotin for Diffuse Cutaneous Systemic Sclerosis: A Phase I/II Multicenter, Randomized, Double Blinded, Safety Study (BRAVOS) Starting early March,  study is looking at The Change in Modified Rodnan Skin Score (mRSS)  NCT03222492 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
An Extended Access Program to Assess Long-Term Safety of Bardoxolone Methyl in Patients with Pulmonary Hypertension  (Ranger) Closed to enrollment NCT03068130 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
A Trial to Evaluate the Safety of Long Term Treatment With Nintedanib in Patients With Scleroderma Related Lung Fibrosis (SENSCIS-ON Extension 1199.225) Closed to enrollment NCT03313180 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
The COllaborative, National QUality and Efficacy Registry for Tracking Disease Progression in a Spectrum of Systemic Sclerosis (Scleroderma) Patients (CONQUER) Upcoming study, A prospective registry of scleroderma patients designed to collect clinical data and biological specimens to inform and support future research in order to understand the natural history of scleroderma NA Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
A double-blind, randomized, placebo-controlled trial evaluating efficacy and safety of oral Nintedanib, 150mg twice daily for 52 weeks in patients with Systemic Sclerosis associated interstitial lung disease (BI SENSCIS) Closed to enrollment NCT02597933 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
A phase III, multi-center, randomized, double-blind, placebo-controlled, parallel-group study to assess the efficacy and safety of Tocilizumab versus placebo in patients with Systemic Sclerosis (WA29767 focuSSced) Closed for enrollment NCT02453256 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
A Dose-Ranging Study of the Efficacy and Safety of Bardoxolone Methyl in Patients with Pulmonary Hypertension (Lariat) Closed to enrollment NCT02036970 Sabrina Elliott
(202) 444-6210
se510@georgetown.edu

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Illinois

Northwestern University Scleroderma CenterChicago

Northwestern Scleroderma Program, Northwestern Medicine
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, M.D., Director
Monique Hinchcliff, M.D., M.S., Director of Translational Research
Mary Carns, M.S., Research Coordinator

Physicians Affiliated with this Center:

PA-C

  • Gastroenterology: Ikuo Hirano, M.D., Darren Brenner, M.D., and Bethany Doerfler, R.D.
  • Pulmonary Medicine/Pulmonary Hypertension: Jane E. Dematte, M.D., Michael Cuttica, M.D., M.S., Rishi Raj, MBBS, and Stuart Rich, M.D.
  • Cardiology: Sanjiv Shah, M.D. and Benjamin Freed, M.D.
  • Dermatology/Dermatopathology: Anne Laumann, MBChB, MRCP (UK) and Emily Keimig, M.D.
  • Hand Surgery: Robert Galiano, M.D.
  • Nephrology: Cybele Ghossein, M.D.
  • Lung Transplant: Sangeeta Bhorade, M.D.
  • Immunotherapy: Richard Burt, M.D.
  • Photopheresis: Jaehyuk Choi, M.D., Ph.D.

Studies

Status

Mechanisms of Fibrosis in Scleroderma

Active

Genetic Polymorphisms in Scleroderma

Active

Novel Biological Therapies for Scleroderma Lung Disease

Active

Scleroderma Biomarker Studies

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:

  • Michael Becker, MD
  • Marcus Clark, MD
  • James Curran, MD
  • Anisha Dua, MD
  • Reem Jan, MD
  • Kim Trotter, MD
  • Kichul Ko, MD
  • Vladimir Liarski, MD
  • Aimee Mayuga, MD

Appointments: (773) 702-6119 or 1-888-824-0200
Research Information: Marcus Clark, MD at mclark@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
Phone: (504) 988-8600
(ask for Kim or Cheryle)
 
Southeast Louisiana Veterans Health Care System
1601 Perdido Street, New Orleans, LA  70112
Phone: (800) 935-8387
(request any of your VA doctors to request consult with Dr. Saketkoo)

University Medical Center Comprehensive Pulmonary Hypertension Center  
3000 Canal St; New Orleans, LA 70112
Phone: (504) 702-5057
(ask for Monique)

Hospitals served: Tulane University Medical Center, VA Hospital, University Medical Center (public hospital, a.k.a. University Hospital, Charity Hospital, and MCLNO)

  • Lesley Ann Saketkoo, M.D., M.P.H. – Director; Associate Professor of Medicine at Tulane University School of Medicine; Sections of Immunology and Pulmonary Medicine
  • Joseph A Lasky, M.D., Ph.D. - Pulmonary Medicine, Interstitial Lung Disease/Pulmonary Fibrosis
  • Monique Brown, R.N. Nurse Coordinator for University Medical Center CPHC 
  • Kim Delaney, R.N. Nurse Coordinator for Tulane Lung Center
  • Sandy Ditta, R.N. Senior Research Coordinator
  • Christine Glynn, R.N. Research Coordinator 
  • Vjayendra Jaligam, M.D. - Cardiology
  • Raman Danrad, M.D. - Radiology
  • Bennett de Boisblanc, M.D. - Pulmonary Medicine / Pulmonary Hypertension
  • Matthew Lammi, M.D. - Pulmonary Medicine / Pulmonary Hypertension
  • Shigeki Saito, M.D. - Pulmonary Medicine / Pulmonary Hypertension
  • Van T. Himel, D.D.S. - Dentistry and Oral Medicine
  • Monika Kowalczyk, M.D. - Gastroenterology
  • Tamarin Hennebury, L.O.T.R. - Director of Therapeutic Wellness (Physical and Occupational Therapy)
  • Tracy LeGros, M.D., Ph.D. - Emergency Medicine and Wound Care, Hyperbaric Specialist
  • Erin Boh, M.D. – Dermatology

Studies

Status

Eular Scleroderma Trials and Research (EUSTAR)

Open

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

Closed for new recruitment

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

Randomised Placebo Controlled Trial of Diet Impact in Systemic Sclerosis 
Open
Developing a Patient Reported Outcome Measure in Systemic Sclerosis related Calcinosis Open
Development of a Patient Reported Raynaud Outcome Measure (African American Branch of Study) 
Open
Development of an International Educational Capillaroscopy Image Bank Open
Randomized Placebo Controlled Clinical Trial in Lenabasum Open for Enrollment February 2018

Monthly support group meets at Tulane, please contact , Ms. Joy Mitchell, Support Group Leader: (504) 301-7737 joymitchell78@gmail.com or Ms. Paige St. Pierre, Support Group Co-Leader (985) 696-5409   paige.stpierre@yahoo.com.

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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., Sc.M., Co-Director
  • Ami Shah, M.D., M.H.S.
  • Zsuzsanna McMahan, M.D., M.H.S.
  • Julie Paik, M.D., M.H.S.
  • Nadia Morgan, M.D., M.H.S.
  • Christopher Mecoli, M.D., M.H.S.

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

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

Longitudinal study designed to help understand the cause of lung disease and other clinical features of scleroderma and other connective tissue diseases.

Call for status/more information

Do Cancer Antigens Propagate an Immune Response and Activate the Disease Process in Scleroderma?

Study aimed at investigating the link between cancer and scleroderma.

Call for status/more information

Effectiveness and Safety of SAR156597 in Treating Diffuse Systemic Sclerosis

To evaluate, in comparison with placebo, the efficacy of SAR156597 administered subcutaneously for 24 weeks on skin fibrosis in patients with dcSSc.

Actively recruiting

Genome Research in African American Scleroderma Patients (GRASP)

Study focusing on genetic markers within African American scleroderma patients in order to better understand the need for future research and treatments.

Call for status/more information

Johns Hopkins Scleroderma Center Cutaneous Tissue Repository (Patients and Controls)

Skin biopsy samples from patients and controls used to establish a skin tissue bank to further investigate the development of scleroderma and scleroderma-like diseases.

Actively recruiting

Oral Ifetroban to Treat Diffuse Cutaneous Systemic Sclerosis or SSc-associated Pulmonary Arterial Hypertension

This study is a randomized, placebo-controlled; double-blind phase 2 trial of patients with dcSSc or SSc-PAH. Twenty participants with SSc-PAH and 14 participants with dcSSc will be randomized to receive either oral ifetroban daily or matching placebo. Study participants will be treated for 12 months, followed by a 30-day follow-up period. The study will test whether Ifetroban is safe and statistically superior to placebo in reducing the effects of their disease at month 12 and explore the ability of Ifetroban to prevent or reverse progression in patients with early disease duration and reverse established disease in patients with longer disease duration.

Actively recruiting

Proof of Mechanism Study of GSK2330811 in Diffuse Systemic Sclerosis

This multi-center, randomized, double-blind (sponsor open), placebo controlled, proof of mechanism study will be the first study to evaluate the safety, tolerability, pharmacokinetics (PK) and pharmacodynamics (PD) of repeat subcutaneous (SC) doses of GSK2330811 in male and female participants with diffuse cutaneous SSc (dcSSc). Participants with active disease and a disease duration of <= 60 months will be enrolled.

Actively recruiting

Prospective Registry of Early Systemic Sclerosis (PRESS)

The goal of this registry is to better our understanding of the epidemiology and biology of early diffuse systemic sclerosis.

Actively recruiting

Scleroderma and Gastrointestinal Disease: Insights into Clinical Phenotypes and Disease Pathogenesis

Patients with and without scleroderma GI disease.  Aim is to improve the approach to diagnosis and management of gastrointestinal disease in scleroderma through investigation of WGT (whole gut transit study).

Call for status/more information

Scleroderma Patient Intervention Network (SPIN)

Participants will be asked to complete online questionnaires every 3 months.  The long-term goal of the study is to develop a way to offer low cost, easily accessible interventions that will improve quality of life.

Actively recruiting

Studies of Serum Plasma Factors in Systemic Sclerosis, Raynaud’s Phenomenon, and Other Connective Tissue Diseases

Longitudinal collection of blood specimens to better understand the cause and activity level of systemic sclerosis, Raynaud’s phenomenon, and other connective tissue diseases.

Call for status/more information

Studies of Serum Plasma Factors in Systemic Sclerosis, Raynaud’s Phenomenon, and Other Connective Tissue Diseases (Control)

Longitudinal collection of blood specimens from healthy controls.

Call for status/more information

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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: Justyna Szreter (617) 638-4312
For trial-related inquiries: Eric Stratton (617) 638-4344

Scleroderma Specialists Affiliated with this Center

Rheumatology:
Robert W. Simms, M.D.
Michael York, M.D.
Maarcin Trojanowski, M.D.

Pulmonary Medicine/Pulmonary Hypertension/Interstitial Lung Disease:
Harrison Farber, M.D.
Arthur Theodore, M.D.

Dermatology/Dermatopathology:
Dr. Christina Lam

Studies Status
Corbus Enrolling
SLS3 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

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

MGH Waltham
52 Second Ave., Suite 2600
Waltham, MA  02451

Website: http://massgeneral.link/scleroderma

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, Fax: 617-643-1274
KSCHALAGO@mgh.harvard.edu, (Kaitlin Schalago, coordinator)

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
Ifetriban in Diffuse Systemic Sclerosis or Systemic Sclerosis-Associated Pulomary Hypertension (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

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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

Scleroderma Program Website: http://www.med.umich.edu/scleroderma/

Scleroderma Program Manager: Jody Fisher (734) 232-2104
Scleroderma Research Manager: Erica Bush (734) 936-5615 / ebush@med.umich.edu

Research Inquiries: ssc-coordinator@umich.edu

  • Dinesh Khanna, M.D., M.S. Director
  • Amber Young, M.D.

Studies

Status

SKIN

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

  • 48 week Double Blind
  • 24 week Open Label
  • 86 subjects, 25 centers across US, Canada and UK
  • Weekly 125 mg abatacept/placebo sub cutaneous injection.
  • Disease duration: <36 months

Background therapies are d/c but escape therapy allowance provided at 6 months

Study Website: http://umich.edu/~asststdy/

Active, Recruiting

FocuSSed: A phase 3, multicenter, randomized, double‐blind placebo-controlled, parallel‐group study to assess the efficacy and safety of Tocilizumab vs. placebo in patients with systemic sclerosis.

  • 48 week Double Blind
  • 48 week Open Label
  • 210 subject, 120 global sites
  • Weekly 162mg TCZ/placebo sub cutaneous injection
  • Disease duration: <60
  • Escape therapy allowance starting at 24 weeks.
Digital Ulcers

RESCUE: Pilot study to assess the efficacy and safety of riociguat vs. placebo in scleroderma- associated digital ulcers 16 week double blind (8 week titration/8 week dose maintenance

  • 16 week Open Label
  • 20 subject, 5 centers
  • TID dosing of riociguat/placebo titrated up beginning with 1mg to 2.5 mg (0.5 is also available should tolerance be an issue)
Diagnosis of SSc and one visible, active, ischemic DU at baseline located at or distal to the proximal interphalangeal joint, and that developed or worsened within 8 weeks prior to screening.
Active, Recruiting
Lung Fibrosis

STRATUS:  A phase 2, randomized, double-blind, placebo-controlled, parallel-group, multicenter trial to evaluate the efficacy and safety of abitzumab in subjects with interstitial lung disease.

  • 104 week double blind treatment period with a 12 week safety follow up
  • 175 subjects , 60 centers
  • Abituzumab (1500 or 500mg)/placebo administered as an intravenous infusion over 1 hour
  • once every 4 weeks with last dose at week 100
  • Stable Mycophenolate is required up to 3 grams a day
  • Diagnosis of SSc with disease duration of <7 years from first non‐Raynaud’s
DLCO > 30% predicted, FVC 40%‐85% predicted and ratio of FVC% predicted to DLCO %predicted <1.8. If these criteria are met the HRCT will be performed and must show 5% fibrosis for the subject to be eligible.
Active, Recruiting

SENSCIS: A double blind, randomized, placebo-controlled trial evaluating efficacy and safety of oral nintedenib for at least 52 weeks in patients with systemic sclerosis associated interstitial lung disease (SSc-ILD)

  • 52 weeks Double blind (primary endpoint). Continuation of blinded treatment for up to 100 weeks.
  • 520 subjects
  • Nintedanib 150 mg/placebo BID with possibility to reduce to 100mg to manage adverse events.
  • Diagnosis of SSc with disease duration of first non‐Raynaud’s symptom within 5years V1
Extent of fibrotic disease in the lung >10%; FVC >40% predicted; DLCO 30%‐89% predicted
Active, Recruiting
Joint Contractures

REACT: Novel strategies to improve arm function in patients with scleroderma.

  • Aim to improve arm function in scleroderma patient with upper extremity contractures.
  • 8 weeks of occupational therapy treatment
  • Participant stipend and travel reimbursement available
Participants must have a contracture of the hand and other joint in at least one arm, such as wrist, elbow, or shoulder, with the ability to demonstrate active range of motion in that arm
Active, Recruiting

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Minnesota

Minneapolis

MHealth
Rheumatology Clinic
Clinics and Surgery Center

909 Fulton St. SE, Minneapolis, MN  55455
Information: (612) 626-6100; Fax: (612) 676-5048
Appointments: (612) 626-6100, option 2

Maple Grove

Rheumatology
University of Minnesota Health Maple Grove Clinics

Floor 2, Desk 4, 14500 99th Ave. N, Maple Grove, MN  55369

Information & Appointments: (763) 898-1080

Physicians associated with the facility:

● Gastroenterology: Dr. Jose Vega-Peralta, Dr. Alexander Khoruts, Dr. Mustafa Arain, Savanna Borne, M.S.N.

● Pulmonary: Dr. Hyun Kim, Dr. David Perlman, Dr. Rade Tomic, Dr. Craig Henke, Dr. Peter Bitterman

● Cardiology: Dr. Mark Pritzker, Dr. Thenappan Thenappan, Dr. Rebecca Cogswell

● Rheumatology: Dr. Jerry Molitor

R.N. Care Coordinator: Lee Anderson; she can be reached at the clinic phone number.

Studies

Status

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

ACTIVELY ENROLLING

 

Rochester 

Mayo Clinic (Rochester)
200 1st St SW, Rochester, MN  55905

Clinic contact: Appointments are by Referral Only
Division of Rheumatology Appointment Office: Ph: 507-284-4550, Fax: 507-284-5508
Or Central Appointment Office: Ph: 507-266-5800, Fax:  800-321-1368

Clinic hours: Mon-Fri 8 am to 5 pm (variable depending on the physician staff)
Current Studies Status
1. Incidence, Prevalence and Mortality of Scleroderma in Olmsted County Active
2. Cardiovascular risk factors and Cardiac events in Scleroderma
Active
3. Incidence, Prevalence and Outcomes of Eosinophilic fasciitis in Olmsted County Active
 
Clinical Trials Status
1. SENSCIS- Safety and Efficacy of Nintedanib in Systemic Sclerosis: A Phase III, Multicenter, Randomized, Double-Blind, Placebo-Controlled Study to Assess the Efficacy and Safety of Nintedanib versus Placebo in Patients with Scleroderma and Interstitial Lung Disease (SSc-ILD)
Active, Not Recruiting
2. A Phase 2 Study to Evaluate Subcutaneous Abatacept vs. Placebo in Diffuse Cutaneous Systemic Sclerosis — A Double-Blind, Placebo-Controlled, Randomized Controlled Trial
Inactive, Not recruiting
3. An observational multicenter international case-control study for the assessment of nailfold capillary abnormalities in patients with systemic lupus erythematosus
Active, Not recruiting

Physicians Affiliated:

Rheumatology, Connective Tissue Disease Group
:
Dr. Ashima Makol, Dr. Thomas Osborn, Dr. Shreyasee Amin, Dr. Thomas Mason, Dr. Kevin Moder, Dr. Floranne Ernste, Dr. Uma Thanarajasingam

Dermatology:
Dr. David Wetter, Dr. Lisa Drage, Dr. Mark Davis, Dr. Alina Bridges, Dr. Michael Camilleri, Dr. Rokea el-Azhary, Dr. Lawrence Gibson, Dr. Marian McEvoy, Dr. Margot Peters, Dr. Gabriel Sciallis

Pulmonology ILD Clinic:
Dr. Jay Ryu, Dr. Teng Moua, Dr. Misbah Baqir, Dr. Sanjay Kalra

Pulmonary Hypertension Clinic:
Dr. Robert Frantz, Dr. Garvan Kane, Dr. Michael J. Krowka, Dr. Sudhir S. Kushwaha, Dr. Robert B. McCully, Dr. Michael D. McGoon, Dr. Joseph G. Murphy

Pediatric patients are also seen

Pediatric Rheumatology
:
Dr. Thomas Mason

Pediatric Dermatology
:
Dr. Dawn Davis, Dr. Megha Tollefson

Most patients are initially evaluated in rheumatology or dermatology and referred to other areas.  Depending on the need, we have experts in many areas including but not limited to nephrology, GI motility, vascular medicine, wound care, orthopedics, physical medicine and occupational therapy.  We offer nailfold videocapillaroscopy, vascular studies, high resolution chest CT and echocardiography specific for pulmonary hypertension evaluation. We have nurses and education clinics, where patients are educated about their disease, medications, and provided other resources for optimal management of scleroderma. 

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New Hampshire

Lebanon

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

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

Clinic hours are 8 a.m. - 5 p.m.
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.
Cardiology: Bruce Andrus, M.D.
Vascular Surgery: Michael Matthew, M.D.
Basic Science: Michael L. Whitfield, Ph.D. and Patricia A. Pioli, Ph.D.

Studies Status
Molecular Characterization of Multi-Organ Involvement in Patients with Systemic Sclerosis Active
A Multicenter, Randomized, Double-Blind, Placebo-Controlled Phase 3 Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis Call for details

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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
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 a.m. - 5 p.m.

Physicians affiliated with this center:

Rheumatology:

  • Suzanne C. Li, M.D., Ph.D.
  • Kathleen A Haines, M.D.
  • Yukiko Kimura, M.D.
  • Ginger Janow, M.D.
  • Jennifer Weiss, M.D.

Dermatology:

  • Helen Shin, M.D.
  • Emily Berger, M.D.
  • Julie Schaffer, M.D.

Radiology:

  • Melissa Liebling, M.D.
  • Mike McGuire, M.D.

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 Scleroderma Program
125 Patterson Street, CAB, 5th floor
New Brunswick, NJ  08903
Office: (732) 235-7217; Fax: (732) 235-6526

Adult Clinical Research Center 
125 Paterson Street, 
East Tower, 8th floor
New Brunswick, NJ  08903
Main number:  (732) 235-6402

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., Professor of Medicine, Director, Rutgers- RWJ Scleroderma Program Program Director, Rutgers-RWJ Rheumatology Fellowship Program

 

Studies

Status

 

NIH/Scleroderma Research Foundation
Genome Research in African-American Scleroderma patients (GRASP)

 

 

opened since 2015, recruiting

 

Corbus Pharmaceuticals
Open-Label Multicenter study to evaluate safety, tolerability, efficacy and pharmacokinetics of Anabasum in systemic sclerosis.

opened since 2017

Merck
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)

opened in 2017, just closed

Corbus Pharmaceuticals:
A Randomized, Double-blind, Placebo-controlled Trial to Evaluate Efficacy and Safety of Anabasum in Diffuse Cutaneous Systemic Sclerosis (RESOLVE)

opening soon

Genentech, UCLA: 
Scleroderma Lung Study III (SLS III): Combining the anti-fibrotic effects of pirfenidone (PFD) with mycophenolate (MMF) for treating scleroderma-related interstitial lung disease.
opening soon

 

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New York

Albany

Albany Steffans
Saratoga Steffans

Steffens Scleroderma Center

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: As part of the Center for Rheumatology, the Steffens Scleroderma Clinic sees adolescent and adult patients with localized or systemic scleroderma.

Physicians affiliated with this center:

  • Lee Shapiro, M.D.
  • Aixa Toledo-Garcia, M.D.
  • Jessica Chapman, M.D.
  • Vivek R. Mehta, MBBS

New Patient Referrals and Appointments: 
Hours: Tuesdays in Albany & Thursdays in Saratoga
Please direct all requests for appointments to: 
Mackenzie Rouleau – New Patient Coordinator
6 Care Lane, Saratoga Springs, NY 12866
Phone: (518) 584-4953, ext. 411
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 to extension 410.

Note: You can access more details regarding these trials by visiting ClinicalTrials.gov
Studies Status
VASCANA (Efficacy and Safety of Vascana in Subjects with Secondary Raynaud's Phenomenon) ClinicalTrials.gov Identifier:  NCT02688270
FocuSSced: A study of the efficacy and safety of tocilizumab in participants with systemic sclerosis ClinicalTrials.gov Identifier: NCT02453256
ASSET: a study of subcutaneous abatacept to treat diffuse cutaneous systemic sclerosis ClinicalTrials.gov Identifier: NCT02161406

 

Great Neck

Northwell Health Division of Rheumatology

Primary Location:
865 Northern Blvd, Suite 302, Great Neck, NY  11021

Satellite Locations:
95-25 Queens Boulevard, Rego Park, NY  11374
180 East Main Street, Suite A. Bayshore, NY  11706
241 East Main Street, Suite 2C. Huntington, NY  11743

Research Information Contact: Rheumatology Research at (516) 708-2546 or RheumResearch@Northwell.edu

General information: Adult patients seen with systemic and localized scleroderma
Questions/appointments: (516) 708-2550

Physicians Affiliated with this Center:
Primary Physician Contact: Sonali Narain, M.D.

  • Richard Furie, M.D.
  • Galina Marder, M.D.
  • Maria Louise Barilla-LaBarca, M.D.
  • Diane Horowitz, M.D.
  • Julie Schwartzman-Morris, M.D.
  • Elena Katzap, D.O.
  • Kamini Shah, M.D.
  • Myron Kleiner, M.D.
  • Michael Repice, M.D.
  • Joseph Mosak, M.D.
  • Yaqoot Khan, M.D.
  • Christine Stamatos, D.N.P.
  • Monica Richey, N.P.
Studies Status
Medimmune Sample Acquisition Study: Patients with Diffuse Cutaneous Scleroderma Recruiting
BMS Sample Acquisition Study: Patients with Skin Tightening Recruiting
STRATUS Clinical Trial: abituzumab for patients with systemic sclerosis and associated ILD Study Terminated
ASSET Clinical Trial: abatacept for patients with recent diagnosis of diffuse cutaneous systemic sclerosis Completed Recruitment


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; Jaime Villar (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: Elizabeth Soto-Cardona, M.P.H., Center Manager (212) 774-2048
Annel Fernandez (212) 774-2123 or Alexandra Morquette (212) 774-7194, Anna Yusov (212) 774-7620

Studies Status
Pulmonary Hypertension Assessment Registry of Scleroderma. A prospective observational longitudinal cohort study of patients with scleroderma who are at high risk for pulmonary hypertension. (PHAROS) Active, recruiting
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.(SCLERODERMA REGISTRY) 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, fully enrolled
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, fully enrolled
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)

The objective of this multi-center trial is to investigate the efficacy and safety of 150mg BID nintedanib in patients with SSc-ILD. Patients will be randomized 1:1 to received placebo or active drug for a minimum of 52 weeks. Primary outcome will be change in FVC from baseline to 52 weeks. A total of 520 patients will be enrolled across all sites.
Contact:

Annel Fernandez
(212) 774-2123
A Phase 2 Study to Evaluate Subcutaneous Abatacept vs. Placebo in Diffuse Cutaneous Systemic Sclerosis- A Double-Blind, Placebo-Controlled, Randomized Controlled Trial (ASSET)

This multi-center trial will test the safety and efficacy of weekly injections of abatacept (125mg) in the treatment of diffuse systemic sclerosis. Participants will be randomized 1:1 to received placebo or active study medication for 48 weeks with a 24 week open-label extension phase. Primary outcome will be change in modified Rodnan Skin Score from baseline to 48 weeks. Target enrollment is 86 across all sites, with 3 patients expected to be enrolled at Hospital for Special Surgery.
Actively recruiting

Contact:
Annel Fernandez
(212) 774-2123
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

The objective of this trial is to determine if rituximab has a marked beneficial effect on clinical disease progression relative to placebo, with minimal toxicity, in subjects with SSc-PAH. This trial will compare patients with SSc-PAH treated with rituximab to those on placebo for change in pulmonary vascular resistance (PVR), as assessed by right heart catheterization. (SSc-PAH)
Actively Recruiting

Contact:
Alexandra Morquette
(212) 774-7194
A multi-center, randomized, double-blind (sponsor open), placebo controlled, repeat-dose, proof of mechanism study to evaluate the safety, tolerability, pharmacokinetics, pharmacodynamics and explore efficacy of GSK2330811 in participants with diffuse cutaneous systemic sclerosis

The objective of this study is to evaluate the safety and tolerability of repeat subcutaneous doses of GSK2330811, an OSM inhibitor with anti-fibrotic effects in preclinical models in patients with diffuse systemic sclerosis. Participants will be randomized in a 3:1 ratio within each cohort to GSK2330811 and placebo respectively. The duration of the study for the participants will be up to 34 weeks including a screening period of up to 6 weeks, a treatment period of 12 weeks and a follow-up period of 16 weeks.
Currently Enrolling

Contact:
Alexandra Morquette
(212) 774-7194 
A Multicenter, Randomized, Double-Blind, Placebo-Controlled Phase 3 Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis

The objective of this study is to assess the efficacy and safety of Lenabasum (formerly Anabasum, formerly JBT101). Lenabasum is a novel synthetic selective oral agonist of cannabinoid receptor type 2 that activates resolution of innate immune responses. This is a multicenter, double-blind, randomized; placebo-controlled, parallel group assessment of efficacy and safety of 52 weeks of treatment with Lenabasum in diffuse cutaneous SSc. Patients will be randomized 2:1 favoring two different doses of active treatment. Lenabasum is administered orally, and is taken twice a day.
Currently Enrolling

Contact:
Anna Yusov
(212) 774-7620
Evaluation of Brentuximab Vedotin for Diffuse Cutaneous Systemic Sclerosis: A Phase 1/2 Multicenter Randomized, Double Blinded, Safety Study (BRAVOS)

The objective of this study is to evaluate the safety and tolerability of intravenous Brentuximab Vedotin. This trial will be conducted as a multicenter prospective double blind placebo controlled dose escalation safety study with Brentuximab Vedotin and stable background immunosuppressive therapy in adult individuals with dcSSc. Eligible participants will be randomly assigned to study treatment, either Brentuximab Vedotin or placebo equivalent in a 6:2 ratio favoring Brentuximab Vedotin. All cohorts will receive intravenous administration of study medication every 3 weeks for 21 weeks, for a total of eight doses.
Currently Enrolling

Contact:
Anna Yusov
(212) 774-7620
A Multi-Center Randomized, Double-Blind, Placebo-Controlled Pilot Study to Assess the Efficacy and Safety of Riociguat in Scleroderma-Associated Digital Ulcers (RESCUE)

The primary objective of this study is to provide preliminary data on the efficacy (digital ulcer net burden) and safety of Riociguat administered 3 times daily in comparison to placebo in patients with scleroderma-associated digital ulcers. Patients are randomized (1:1), for a total treatment of 16 weeks, including a 8-week titration period and 8 weeks of maintenance.
Currently Enrolling

Contact:
Anna Yusov
(212) 774-7620
A Phase 2 Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of Ifetroban in Patients with Diffuse Cutaneous Systemic Sclerosis or Systemic Sclerosis-Associated Pulmonary Arterial Hypertension

Ifetroban is a-well characterized pharmacological antagonist of the Thromboxane Prostanoid (TP) Receptor (TPr). This placebo-controlled study will explore Ifetroban in patients with diffuse cutaneous scleroderma (dcSSc) or scleroderma associated pulmonary arterial hypertension (SSc-PAH). The multicenter study will enroll a total of 5 patients at HSS. Patients will be stratified based upon their clinical presentation of accompanying pulmonary arterial hypertension. There will be a 365 day blinded treatment in this study.
Currently Enrolling

Contact:
Alexandra Morquette
(212) 774-7194
Scleroderma Lung Study III (SLS III): Combining the anti-fibrotic effects of pirfenidone (PFD) with mycophenolate (MMF) for treating scleroderma-related interstitial lung disease

The objective of this study is to assess the relative efficacy and safety of combining two drugs with different mechanisms of action, Pirfenidone and mycophenolate, as compared to treatment with mycophenolate alone, for the treatment of scleroderma-related interstitial lung disease.  This is a phase II, multi-center, randomized, double-blinded, placebo-controlled trial. Patients will be randomized 1:1 to placebo and mycophenolate or Pirfenidone and mycophenolate for a 18-month randomization period with a 1 month follow up period. A total of 150 patients will be enrolled in the study across all sites.
Currently Enrolling

Contact:
Annel Fernandez
(212) 774-2123
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)

The objective of this trial is to determine if rituximab has a marked beneficial effect on clinical disease progression relative to placebo, with minimal toxicity, in subjects with SSc-PAH. This trial will compare patients with SSc-PAH treated with rituximab to those on placebo for change in pulmonary vascular resistance (PVR), as assessed by right heart catheterization.
Currently Enrolling

Contact:
Alexandra Morquette
(212) 774-7194

 

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, M.D., M.Sc

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, M.D., M.Sc
  • Pediatric Rheumatology: Lisa Imundo, M.D.
  • Pulmonology/Interstitial Lung Disease: Nina Patel, M.D., and David Lederer, M.D., M.S.
  • Pulmonology/Lung Transplantation: Selim Arcasoy, M.D.
  • Pulmonary Hypertension/Cardiology: Erika Berman-Rosenzweig, M.D., and Jennifer Haythe, M.D.
  • Dermatology: Stephanie Gallitano, M.D.
  • Pediatric Dermatology: Maria C. Garzon, M.D., Kimberly Morel, M.D., and Christine Lauren, M.D.
  • Gastroenterology: Daniela Jodorkovsky, M.D., David D. Markowitz, M.D.
  • Medical Nutrition: David S. Seres, M.D., Sc.M., P.N.S.
Studies Status
Prospective Registry of Early Systemic Sclerosis (PRESS), Phenotypic, Serologic, and Biomarker/Genetic Characteristics of Early Diffuse Cutaneous Systemic Sclerosis 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
Genome Research in African American Scleroderma Patients (GRASP) 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 Closed

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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

Closed

Duke Scleroderma clinic Registry Recruiting
A Double Blind, Randomised, 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) Recruiting
Microvascular and Fibrosis Imaging Study Recruiting
Scleroderma Treatment With Celution Processed Adipose Derived Regenerative Cells (STAR) NOT Recruiting

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Ohio

Cincinnati 

University of Cincinnati Medical Center  – CTD-ILD and Scleroderma Clinic
200 Albert Sabin Way, Cincinnati, OH 45220. Third floor.

Phone: (513) 475-8523

Scheduler - Lisa Davis

Physicians Affiliated with this Center:

Rheumatology
Dr. Surabhi A. Khanna
Pulmonary
Interstitial lung disease (ILD)

Dr. Nishant Gupta
Dr. Frank McCormack
Dr. Gaurav Khanna

Pulmonary Hypertension
Dr. Jean Elwing 

Gastroenterology
Dr. Vidhya Kunnathur 

Nephrology
Dr. Suresh Kamath 

Chest Radiologist
Dr. Sangita Kapur 

Chest Pathologist
Dr. Dani Zander
Dr. Kathryn Wikenheiser-Brokamp 

Basic research
Dr. Satish Madala

Research Coordinator
Rebecca Ingledue

Research Information:

Studies Status
Double Blind, Randomised, 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). Accepting patients
Pulmonary Arterial Hypertension Clinical Trials Multiple clinical trial and registry opportunities are available.

Please contact UC Pulmonary Hypertension Research Team to review opportunities.

UC Pulmonary Hypertension Research Coordinator:  Emilee Orr, RN, (513) 558-3077

UC Pulmonary Research Manager:  Tammy Roads, (513) 558-2148

 

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

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)

Closed

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.

Closed

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 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)-955-8405
*If an earlier appointment is needed please talk with our office manager, Jennifer Meuser.

Main number: (215) 955-8430 (option 1) 

Physician Inquiries: (215) 503-5042; (215) 955-2820
Research Inquiries: (215) 955-8405
*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. Actively enrolling
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

Penn Scleroderma Center

Locations:

Hospital of the University of Pennsylvania
Perelman Center for Advanced Medicine
South Pavilion, First Floor
3400 Civic Center Boulevard
Philadelphia, PA  19104

Penn Medicine Radnor
250 King of Prussia Road
Radnor, PA  19087 

Penn Medicine Valley Forge
1001 Chesterbrook Boulevard
Berwyn, PA  19312

Physicians Affiliated with this Center:

  • Peter Merkel, M.D., M.P.H.
  • Chris Derk, M.D.
  • Nora Sandorfi, M.D.
  • Colin Ligon, M.D., M.H.S.

For Appointments Call (800) 789-7366; Fax: (215) 349-5703

Research Coordinators:

Studies

Status
A Multicenter, Randomized, Double-Blind, Placebo-Controlled Phase 3 Trial Study to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis Actively Recruiting
Genome Research in African American Scleroderma Patients (GRASP) Study Actively Recruiting

 

Pittsburgh

Presby.jpgUPMC & University of Pittsburgh, Arthritis and Autoimmunity Center
Falk Medical Building, Suite 2B, 3601 Fifth Avenue, Pittsburgh PA 15213
Visit website

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., M.P.H.

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

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

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

Actively Recruiting
SPIN (The Scleroderma Patient-centered Intervention Network) Actively Recruiting
RESCUE - Safety and effectiveness of Riociguat in scleroderma patients with digital ulcers Actively Recruiting
LARIAT- A Dose-Ranging Study of the Efficacy and Safety of Bardoxolone Methyl in Patients with Pulmonary Hypertension. 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
Kaila Schollaert-Fitch, MA, Clinical Research Coordinator
Emily Mirizio, Research Technician

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

Physicians Affiliated with this Center:

Rheumatology:

  • Kathryn Torok, M.D.
  • Margalit Rosenkranz, M.D.
  • Daniel Kietz, M.D.
  • Elaine Cassidy, M.D.
  • Abbe de Vallejo, Ph.D.

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

Scleroderma Collaborative Research Grant (SCORE): Identifying juvenile scleroderma immunophenotype subsets. A CARRA pilot study Anticipated Enrollment: Spring 2017

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: Richard M. Silver, M.D., (843) 792-3484 

Research Inquiries: Kelley Kajdasz, (843) 792-5290
Richard M. Silver, M.D.
Carol Feghali-Bostwick, Ph.D.

Physicians Affiliated with this Center:

Rheumatology:

  • Richard M. Silver, M.D.
  • Edwin A. Smith, M.D.
  • Faye Hant, D.O.
  • Aiken McNair, P.A.
  • Celine Ward, M.D.
  • Katherine Silver, M.D.

Gastroenterology:

            Pooja S. Elias, M.D.

Pulmonary Medicine/Pulmonary Hypertension:

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

Cardiology:

  • Marian Taylor, M.D.
  • Ryan Tedford, M.D.

Dermatology/Dermatopathology:

  • Richard M. Marchell, M.D.
  • Laura Winterfield, M.D.

Dental Surgery:

  • Michele Ravenel, D.M.D.

Hand Surgery:

  • M. Lance Tavana, M.D.

 

Studies Status
Efficacy and Safety of Riociguat in Patients with Systemic Sclerosis Filled
Care Center for Clinical Research, CCCR (P30) Recruiting
Prospective Registry of Early Systemic Sclerosis, (PRESS) Phenotypic, Serologic, and Biomarker/Genetic Characteristics of Early Diffuse Cutaneous Systemic Sclerosis Recruiting
Safety and Suitability of Dabigatran to Inhibit Thrombin in Systemic Sclerosis Recruiting
Scleroderma Lung Study Recruiting
Cumberland Ifetroban Study Recruiting
BRAVOS Study Recruiting

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Tennessee

University of Tennessee Scleroderma CenterMemphis

University of Tennessee Health Science Center
956 Court Avenue, Room G326, Memphis, TN 38163
Phone: 901-448-5774 (Academic Office)
www.uthsc.edu

Arnold E. Postlethwaite, M.D., Chair - 901-448-5774
Debendra Pattanaik, M.D. - 901-448-5774
Syed Raza, M.D. - 901-448-5774
Bradley Postlethwaite, M.D. - 901-448-5774
Vaishnavi Pulusani, M.D. - 901-448-5774
Linda Myers, M.D. (Pediatric only) - 901-448-5774
Monica Brown, M.D. (Pediatric only) - 901-448-5774

Clinical Practice

University Methodist Medical Practice
1211 Union Avenue, Ste. 200, Memphis, TN 38104

Debendra Pattanaik, M.D. - 901-525-0278 – Appointments
Titilioa Akhigbe, M.D. - 901-525-0278 – Appointments

Regional One Health – (Medplex)
880 Madison, Ste. 4E01, Memphis, TN 38103

Arnold Postlethwaite, M.D. - 901-545-6969 – Appointments
Syed Raza, M.D. - 901-545-6969 - Appointments

UT Regional One Health 
6555 Quince Rd., Memphis, TN 38119

Syed Raza, M.D. - 901-515-3150 – Appointments

University Clinical Health
6401 Poplar Avenue, Ste. 190, Memphis, TN 38119

Bradley Postlethwaite, M.D. - 901-866-8700 – Appointments
Vaishnavi Pulusani, M.D. - 901-866-8700 – Appointments

LeBonheur Children’s Hospital
Linda Myers, M.D. (Pediatric only) - 901-287-7337 - Appointments
Monica Brown, DO (Pediatric only) - 901-287-7337 – Appointments

Our physicians specialize in all connective tissue diseases with emphasis on scleroderma, rheumatoid arthritis and systemic lupus erythematosus.

Current Research
Dr. Debendra Pattanaik:  Systemic Lupus Erythematosus
Dr. Arnold Postlethwaite:  Rheumatoid Arthritis, Systemic Sclerosis, Vitamin D in Rheumatoid Arthritis

For specific information regarding studies please call 901-448-5774.

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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, M.D., M.P.H.
  • Shervin Assassi, M.D., M.S.
  • Gloria Salazar, M.D., M.S.

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, filled

ASC01 – Rituximab in SSc-Pulmonary Arterial Hypertension

Active, enrolling

STAR study (Cytori) Active, filled
STAT study – Stem Cell Transplant study in early diffuse scleroderma Active, enrolling
FocuSSced Study – early SSc lung disease Active, enrolling
SenScis Study – early SSc lung disease Active, enrolling
LARIAT and CATALYST (Reata) – Pulmonary hypertension in SSc Active, enrolling
STRATUS (Merck-Serono) early SSc lung disease             
Enrollment to start 2nd quarter 2017

 

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Utah

University of Utah Scleroderma CenterSalt Lake City

University of Utah Scleroderma Center
Chronic Disease Clinic
Rheumatology/Pulmonology/Gastroenterology

50 North Medical Drive
Salt Lake City, Utah 84132
801-585-3882

Appointments: 
New Patients: Physician referral and records required.

FAX referral to 801-581-6069.

If you have any questions about new patient referrals or other questions regarding our clinic please call 801-585-3882.

Research Inquiries: 801-585-6468

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

  • Rheumatology, Tracy Frech, M.D., M.S
  • Pulmonology, Pulmonary Arterial Hypertension: Nathan Hatton, M.D.; John Ryan, M.D.
  • Pulmonology, Interstitial Lung Disease: Mary Beth Scholand, M.D.
  • Dermatology, Chris Hansen, MD
  • Gastroenterology: Kathryn Peterson, M.D.; Andrew Gawron, M.D., Kathleen Boynton, M.D.
  • Oncology: Daniel Couriel, M.D.
Studies Status

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

CLOSED

Systemic sclerosis (SSc) vasculopathy: Improved clinical monitoring and treatment.

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

CLOSED

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).

ACTIVE

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

ACTIVE

A pilot study to assess the efficacy and safety of riociguat vs. Placebo in scleroderma-associated digital ulcers

RECRUITMENT PENDING 

Validation of Outcome Measures in Scleroderma-Associated Gastrointestinal Involvement Registry

CLOSED TO ENROLLMENT

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

ACTIVE

Scleroderma Patients and Renal Crisis Study (SPARCS)

RECRUITMENT PENDING 

Small intestinal bacterial overgrowth (SIBO) in systemic sclerosis

RECRUITMENT PENDING 

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

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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.

For appointments: (206) 223-6824
For MD calls: (206) 223-6668

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

Other providers associated with our program are:

  • Vivian Stone, M.D.
  • Su Yin, M.D.
  • Amsih Dave, M.D.
  • Erin Bauer, M.D.
  • Jane Buckner, M.D.
  • Eliazabeth Jernberg, M.D.
  • Kori Dewing, ARNP
  • Karen Huisinga, ARNP

We have the following trials open:

  • Nintedanib for scleroderma lung disease
  • Scleroderma Registry

The contact person for trials would be Jeffery Carlin at (206) 223-6824

For more information on studies: https://www.benaroyaresearch.org/our-research/clinical-research/currently-enrolling-studies

 

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 (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)
Any additional questions can be directed to Dr. Csuka’s Administrative Assistant at (414) 955-7023

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

Research Information:
Marit Johnson, R.N., Clinical Research Coordinator (414) 955-7022, mjohnson@mcw.edu or (414) 955-7023

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 Closed

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