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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

 

Tuscon

Banner University Medical Center
3838 N. Campbell Ave., Bldg 2
Clinic F
Tucson, AZ 85719

https://deptmedicine.arizona.edu/divisions/pulmonary-allergy-critical-care-and-sleep-medicine
https://deptmedicine.arizona.edu/divisions/rheumatology

Clinic hours:  Monday - Friday 8 a.m. - 4:30 p.m.

Director:  Sachin Chaudhary, M.D.
Interstitial Lung Disease Program

Co-Director: Alicia Rodriguez, Pla., M.D., Ph.D., M.P.H.
Scleroderma and Vasculitis Center

Research Coordinators:  Heidi E. Erickson B.S.N., R.N.; Valerie R. Bloss, M.P.H.; Maria Gordon, M.S.

Physicians Affiliated with this Center:

Interstitial Lung Disease Program: (Appointments: (520) 694-3730)
Sachin Chaudhary, M.D.; Bhupinder Natt, M.D.; Kenneth S. Knox, M.D.; Tammer Y. El Aini, M.D.

Rheumatology: (Appointments: (520) 694-4000)
Alicia Rodriguez, Pla., M.D., Ph.D., M.P.H.; C. Kent Kwoh, M.D.; Shariq I. Chudhri, D.O.; Sabina Mian, M.D.; Dominik G. Sudano, M.D.; Ernest R. Vina, M.D.; M.S.

Pulmonary Hypertension Program:  Franz Rischard, D.O.

Lung Transplantation Program:  Steven R. Knoper, M.D.; Joshua Malo, M.D.; Sachin Chaudhary, M.D.; Bhupinder Natt, M.D.

Gastroenterology:  Hemanth Gavini, M.D.

GI Surgery:  Iman Ghaderi, M.D., M.Sc., F.R.C.S.C., F.A.C.S.

Dermatology:  Caroline A. Bangert, M.D.

Hand Surgery:  Tolga Turker

Thoracic Radiology:  Veronica Arteaga, M.D.; Diana Palacio, M.D.; Kavitha Yaddanapudi, M.D.

Nephrology:  Bijin Thajudeen, M.D.

Current Clinical Trials:

Studies Status
A multi-center, randomized, bouble-blinded, placebo-controlled trial to evaluate the safety and efficacy on inhaled Trepostinil in subjects with pulmonary hypertension due to parenchymal lung disease.  Active
Comprehensive phenotypic characterization of patients with scleroderma associated interstitial lung Disease and pulmonary hypertension.  Active
Efficacy and safety of Nintedanib in patients with progressive fibrosing interstitial lung disease (PF-ILD) (INBUILD).  Not currently recruiting

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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., Tamiko Katsumoto, M.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., 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

GSK2330811 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 a.m. - 5 p.m., Monday through Friday

Scleroderma Center Contact: marie.frank@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

  • Monique Hinchcliff, M.D. (Rheumatology)
  • Inderjit Singh, M.D. (Pulmonary Vascular Disease)
  • Danielle Antin-Ozerkis, M.D. (Pulmonary Medicine, Interstitial Lung Disease)
  • Erica Herzog, M.D. (Pulmonary Medicine, Interstitial Lung Disease)
  • Mridu Gulati, M.D. (Pulmonary Medicine, Interstitial Lung Disease)
  • Edward Miller, M.D. (Cardiology)
  • Amir Masoud, M.D. (Gastroenterology)
  • Mayra Sanchez, M.D. (Gastroenterology)
  • Ian Odell, M.D. (Dermatology)
  • Brett King, M.D. (Dermatology)
  • Kristin Curran, P.A.-C. (Pulmonary Medicine)
  • Victoria Esparo, A.P.R.N. (Rheumatology)

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 and other autoimmune conditions.

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 Suzanne Bauguess, (202) 444-6211, smb228@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 have access to a support network and serve as a way to learn more about Scleroderma patients.  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 
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 Multicenter, Double-Blind,
Randomized, Placebo-Controlled, Phase 2 Pilot Study Evaluating Intravenous Iloprost in Subjects With Symptomatic Raynaud’s Phenomenon Secondary to Systemic Sclerosis (ES201)
This study is using a medication currently approved in Europe for Raynaud's Phenomenon secondary to Scleroderma, and the goal is to get approval for this potent medication in the United States.  This study will start recruiting patients in mid-March.   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 Dermatomyositis  (DETERMINE)
This study is planned to start in spring of 2019, it is looking at the impact of Lenabasum on improving dermatomyositis patients. This is a synthetic THC medication which has shown positive results in earlier trials.   Sabrina Elliott
(202) 444-6210
se510@georgetown.edu
Randomized, Multicenter,
Double-Blind, Placebo Controlled, Phase 3 Study to Evaluate the Efficacy and Safety of IgPro10 (intravenous
immunoglobulin, Privigen®) for the Treatment of Adults with Systemic Sclerosis (SSc) (IMPRESS)  
This study is looking to see the impact of an intravenous immunoglobulin, called Privigen, on improving the skin disease of patients with Systemic Sclerosis. It will be active in late 2019.   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
A Multicenter, Randomized, Double-Blind, Placebo-Controlled Phase 3 Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis (RESOLVE) This study is assessing the efficacy and safety of Lenabasum for the treatment of diffuse cutaneous systemic sclerosis by improving the skin disease. This is a synthetic THC medication that has shown positive results in earlier phase trials. 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 Suzanne Bauguess
(202) 444-6211
smb228@georgetown.edu
Evaluation of Brentuximab Vedotin for Diffuse Cutaneous Systemic Sclerosis: A Phase I/II Multicenter, Randomized, Double Blinded, Safety Study (BRAVOS) This is an early phase study looking at test the impact of Brentuximab Vedotin on improving the skin disease of patients with Scleroderma. 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) This is a long-term access study made available to participants who were previously on Lariat and for participants completing the Catalyst trial to have access to the study medication prior to FDA approval. 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) This is a long-term access study made available to participants who were previously on the BI SENSCIS 1199.214 trial to have access to the study medication prior to FDA approval.   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) 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 as an extension of Standard of Care practices  NA 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 & New Patient Appointments: (312) 695-6119
Research Inquiries: (312) 503-1137
Fax: (312) 695-6060

John Varga, M.D., Director
Mary Carns, M.S., Research Coordinator
Chase Correia, M.D.
Elisa Hoellerich, P.A.-C.

Physicians Affiliated with this Center:

PA-C

  • Gastroenterology: Ikuo Hirano, M.D., Darren Brenner, M.D.
  • Nutrition: Bethan Doerfler, M.D.
  • Pulmonary Medicine/Pulmonary Hypertension: Jane E. Dematte, M.D., Michael Cuttica, M.D., M.S., and Stuart Rich, M.D.
  • Cardiology: Sanjiv Shah, M.D. and Benjamin Freed, M.D.
  • Dermatology/Dermatopathology: Anne Laumann, M.B.Ch.B., M.R.C.P. (U.K.), 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.
  • Hematology and Oncology: Jayesh Mehta, M.D.
  • Neuromuscular: Jinny Tavee, M.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, M.D.
  • Marcus Clark, M.D.
  • James Curran, M.D.
  • Anisha Dua, M.D.
  • Reem Jan, M.D.
  • Kim Trotter, M.D.
  • Kichul Ko, M.D.
  • Vladimir Liarski, M.D.
  • Aimee Mayuga, M.D.

Appointments: (773) 702-6119 or 1-888-824-0200
Research Information: Marcus Clark, MD at mclark@medicine.bsd.uchicago.edu

University of Illinois at ChicagoClinic Information: AKC Clinic
University of Illinois at Chicago Outpatient Care Center (OCC)

1801 West Taylor St., Suite 3A, 3rd Floor, Chicago, Illinois 60612

Patients Seen: Adults, systemic and localized sclerosis; Hours: 8 a.m. to 5 p.m. Monday- Friday

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

Appointment Scheduling: (312) 413-5569
Physician Inquiries: (312) 355-5079
Clinic information: Bernie Mac Sarcoidosis Translational Advanced Research (STAR) Center University of Illinois at Chicago Outpatient Care Center (OCC)
1801 West Taylor St., Suite 3C, 3rd Floor, Chicago, Illinois 60612

Patients Seen: Sarcoidosis
Physician Affiliated with this Center:

  • Nadera Sweiss, M.D.
  •  

    Appointment Scheduling: (312) 996-5723

    Research Contact: Hasib Zabih, hzabih2@uic.edu

    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, Hypopigmentation

    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

    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

    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

    The Study of Discordant Twins in Scleroderma

    Collection of blood sample and medical history from twin with scleroderma as well as from the twin without scleroderma

    Call for status/more information

    Scleroderma Lung Study III: Combining the anti-fibrotic effects of pirfenidone with mycophenolate for treating scleroderma-related Interstitial Lung Disease

    Clinical trial for individuals with new onset lung disease

    Call for status/more information

    Collaborative National Quality and Efficacy Registry for Tracking Disease Progression in Systemic Sclerosis (Scleroderma) Patients (ConQuer)

    Registry to develop a large observational group of early Scleroderma patients that will foster research collaboration, expanded geographical reach as well as establish an infrastructure for future Scleroderma studies.

    Actively 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: 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
    ADFERNANDES@mgh.harvard.edu, (Ana Fernandes, Research Manager)

    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
    Lenabasum in Diffuse Cutaneous Systemic sclerosis (Phase III Trial) Active, recruiting
    The Collaborative, National Quality, and Efficacy Registry (CONQUER) - A collaborative, multi-center database of patients with scleroderma Active, recruiting
    GLPG1690 (Autotaxin inhibitor) for 24 weeks in subjects with systemic sclerosis (Phase II Trial) Upcoming

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    MichiganUniversity of Michigan Division of Rheumatology

    University of Michigan Scleroderma CenterAnn Arbor

    University of Michigan, Scleroderma Program
    3rd Level Taubman Center
    Clinic Areas A
    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 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.
    • Vivek Nagaraja, M.D.

    General questions:  ssc_coordinator@umich.edu
    For physicians: khannad@med.umich.edu

    STUDY

    DESCRIPTION

    CONTACT/PI

    SKIN 

    GSK2330811

    A multi-centre, 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.

    • 12 week Double Blind/ 16 week follow up
    • 20-40 subjects across two cohorts
      • Some background therapies including mycophenolate (3 grams/stable dose last 3 months) and low dose oral corticosteroids (<10 mg stable 1 month) are allowed.
    • Bi- weekly 100/300 mg of GSK2330811 or placebo sub cutaneous injections. Totaling 6 injections of the course of the study.
    • Disease duration: <60 and mRSS >10 and < than 35 at screening plus additional active disease criteria: increasing skin involvement in the last 6 months, disease duration of <18 months or CRP of >6 mg/l) 
    • FVC <50% of predicted or DLCO corrected <40% of predicted are exclusionary.  
    • Optional blister biopsy 



    Recruiting April 2018

    Monica Sanborn

    734-232-2090
    jaafarsa@umich.edu
    PI: Dr. Nagaraja

    GLPG1690

    A Phase 2a randomized, double-blind, placebo-controlled, multi-center study to evaluate the efficacy, safety, and tolerability of orally administered GLPG1690 for 24 weeks in subjects with systemic sclerosis

    • 24-week Double Blind/ 16 week follow up/li>
    • 30 subjects
    • Daily dosage of 600mg study drug/placebo with a 2:1 ratio. Disease duration: <60months and mRSS >10
    • FVC < 45% of predicted within last 6 months is exclusionary
    • Prohibited medications within 3 months prior to the baseline visit and during the treatment period: prednisone or its equivalent >10 mg/day, methotrexate>20 mg/week, azathioprine >150 mg/day, MMF >3 g/day, mycophenolic acid >2.16 g/day, and leflunamide >20 mg/day
    • Clinically significant abnormalities detected on ECG at screening of either rhythm or conduction, QTcF >450 ms, or a known long QT syndrome.
    • Biopsies required at two time points


    Recruiting

    Sara Jaafar

    734-232-2119
    monsan@med.umich.edu 

    PI: Dr. Khanna

    BRAVOS

    Evaluation of Brentuximab Vedotin for Diffuse Cutaneous Systemic Sclerosis: A Phase ½ Multicenter Randomized, Double Blinded, Safety Study

    • Three ascending dose cohorts will receive brentuximab/placebo (0.6mg/kg, 1.2mg/kg and 1.8mg/kg. Each cohort will receive intravenous administration every 3 weeks for 21 weeks, with a total of 8 doses. 24 participants with 8 in each cohort.
    • Double blind treatment for 21 weeks followed by 27 weeks of follow up.
    •  Disease duration: <60 and mRSS > 10 and <45 at screening plus additional active disease criteria: increasing skin involvement in the last 6 months or an mRSS that has not decreased >3 units within last 6 months or meets protocol specific criteria around SSc lung disease.  
      • Documentation of at least 12 weeks of ongoing immunosuppressive therapy for SSc at time of enrollment with 4 weeks of stable dose for: methotrexate <25mg, mycophenolate <3g, or Azathioprine <3mg/kg/day.
      • FVC <60% of predicted or DLCO corrected <60% of predicted are exclusionary
      • Skin biopsies at two time points.

    Recruiting
    Monica Sanborn

    734-232-2090
    monsan@med.umich.edu 

    PI: Dr. Khanna

    RAYNAUDS PHENOMENON 

     

    A Multicenter, Double-Blind, Randomized, Placebo-Controlled, Phase 2 Pilot Study Evaluating Intravenous Iloprost in Subjects with Symptomatic Raynaud’s Phenomenon Secondary to Systemic Sclerosis

    • 5-day outpatient infusion of iloprost versus placebo with 1:1 randomization
    • 40 subjects
    • Diagnosis of SSc and Raynaud’s Phenomenon with at least a 2-phase color change in fingers
    • History of lung disease as defined by FVC of <45% predicted is exclusionary.
    • Stable dose of vasodilators including PDE5 inhibitors such as sildenafil, is required 2 weeks prior to screening.
    • Epoprostenol requires a wash-out of 8 weeks prior to screening.
    • 10 symptomatic RP attacks, documented in the ePRO diary, occurring over at least 3 separate days of the 5-day eligibility period



    Recruiting
    Sara Jaafar

    734-936-5615
    jaafarsa@umich.edu

    PI: Dr. Nagaraja

    LUNG FIBROSIS 

    SLS 3

    Combining the anti‐fibrotic effects of pirfenidone (PFD) with mycophenolate (MMF) for treating scleroderma‐ related interstitial lung disease.

    • 18- month double blind, phase 2 with 1 month follow up visit
    • 150 subjects
    • Mycophenolate 250mg capsules + Pirfenidone 267mg capsules or placebo.  The dosage will escalate if tolerated over a monthly 4 step titration plan.
    • FVC‐% of <80% at screening and Grade >2 on the Magnitude of Task component of the Mahler Modified Dyspnea Index are inclusionary. 
    • FVS-% of 45% at screening or baseline; FEV1/FVC ration <0.68 at screening or baseline and DLCO corrected -% of 30% are all exclusionary.  
    • Disease duration of <84 months
    • Extensive prohibited medication list with wash-out of at least 30 days, refer to protocol.



    Recruiting:
    Monica Sanborn

    734-232-2090
    monsan@med.umich.edu

    Dr. Nagaraja

    JOINT CONTRACTURES 

    REACH

    Novel Rehabilitation Strategies to improve are function in patients with Scleroderma 

    • Have a diagnosis of systemic sclerosis, diffuse cutaneous subset; disease duration < 5 years from 1st non Raynaud phenomenon sign or symptom
    • 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
      • Willing to travel to participate in therapy and outcome assessments.
      • Have an Android, iPhone, iPad or computer tablet to load the home exercise App



    Coming Soon
    Jennifer Serrano

    734-232-2090
    monsan@med.umich.edu

    Dr. Khanna/Dr. Murphy

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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

    Office hours: Mon 8-12,  Tues 8AM-4PM and Wed 8AM-4PM

    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)

    CLOSED

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

    actively enrolling

    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.
    actively enrolling
    IV Iloprost for Scleroderma Raynaud (EICOS/MEDPACE opening soon

     

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    New York

     

    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

     

    Saratoga Springs

    Scleroderma Center
    Community Care Rheumatology
    Suite 330
    1 West Avenue
    Saratoga Springs, NY 12886

    Physicians at this center:

    • Lee Shapiro, M.D.
    • Jessica Chapman, M.D.

    To schedule an appointment: (518) 782-3899

     

    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, M.S.
    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 a.m. to 5 p.m.
    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
    COllaborative, National QUality and Efficacy Registry for Tracking Disease Progression in Systemic Sclerosis (Scleroderma Patients) (CONQUER) Active, Recruiting
    Scleroderma Biobank Active, Recruiting
    A Multicenter, Randomized, Double-Blind, Placebo-Controlled Phase 3 Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis Active, Recruiting
    Genome Research in African American Scleroderma Patients (GRASP) Active, Recruiting
    Screening High Resolution Computed Tomography Scan of the Chest to Detect Interstitial Lung Disease in Systemic Sclerosis (SScREEN ILD) Active, Recruiting
    Validation of the preliminary Assessment of Scleroderma associated RAynaud's Phenomenon (ASRAP) questionaire 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

    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

    Columbus

    Ohio State University Wexner Medical Center,
    Martha Moorehouse Clinic
    2050 Kenny Rd., Ste. 2200, Columbus, OH 43221
    (614) 293-4837
    8 a.m. - 12 Noon, Monday mornings
    Adult patients only

    Physicians Affiliated with this Center:

    • Vascular: Steven Dean, M.D.
    • Gastrointestinal: Jon Walker, M.D.
    • Pulmonary: Nitin Bhatt, M.D., Veronica Franco, M.D., Jimmy Smith, M.D.
    • Dermatology: Benjamin Kaffenberger, M.D.

    Research Information:

    Studies Status
    Ohio State University Scleroderma Registry
    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

     

    Cincinnati

    University of Cincinnati Medical Center  –
    Scleroderma Clinic now at 2 locations for patient's convenience
    Locations 1-3590 Lucille Dr Ste 2700, Cincinnati, OH 45213
    Location 2-7798 Discovery Dr Ste F, West Chester, OH 45069
    Scheduler- Tammy Baker.
    Phone: (513) 475-8523

    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

     

    Cleveland

    Cleveland Clinic
    9500 Euclid Avenue
    Cleveland, Ohio 44195
    (216) 444-2200

    Cleveland Clinic’s Scleroderma Program is dedicated to helping patients and their families who are affected by scleroderma.  Established under the leadership of Soumya Chatterjee, M.D., it includes a multidisciplinary clinic so that patients can seamlessly receive all the care that they need.  Our program’s goals are to help patients best control their disease and improve their quality of life.  Our treatment approach involves patient-customized treatment plans, including rheumatologists, pediatric rheumatologists, pulmonologists, gastroenterologists, dermatologists, cardiologists as well as others, as needed.  Cleveland Clinic is actively engaged in research that seeks to understand how the disease begins and develops in hopes of developing innovative new treatments.  Children with scleroderma are seen by specially trained pediatric rheumatologists at Cleveland Clinic Children’s, who collaborate with our adult care team as needed to ensure the best outcomes for young patients.

    Appointments:  (216) 444-2273
    Research Inquiries:  (216) 445-6988

    Clinic Hours:  Monday-Friday 8 a.m. 5 p.m.

    Physicians Involved:

    Studies

    Status

    Multicenter, Randomized, Double-Blind, Placebo-Controlled Phase 3 Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis NCT03398837

    Active, recruiting

    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. STUDY NUMBER: ACT14604 NCT02921971

    Active, not recruiting

    A phase II study to evaluate subcutaneous abatacept vs. placebo in diffuse cutaneous systemic sclerosis—a double-blind, placebo-controlled, randomized controlled trial NCT02161406

    Active, not 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).

    NCT02597933

    Active, not recruiting

    A Study of the Efficacy and Safety of Bardoxolone Methyl in Patients with Connective Tissue Disease-Associated Pulmonary Arterial Hypertension/CATALYST NCT02657356

    Active, recruiting

    An open-label extension trial to assess the long term safety of Nintedanib in patients with ‘Systemic Sclerosis associated Interstitial Lung Disease’ (SSc-ILD) NCT03313180

    Active, recruiting

     

    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
    • Rujuta Trivedi, M.D., Rheumatology
    • Navya Parsa, M.D., Rheumatology
    • Samer Khouri, M.D., Cardiology, Pulmonary Hypertension
    • Fadi Safi, M.D., Pulmonary 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 Gilmore, R.N., Research Coordinator
    • Oralia Hensley, Administrative Assistant, Oralia.Hensley@utoledo.edu

    The center was established in 1992. Currently, we follow approximately 130 SSc patients who are evaluated on a 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

    Role of vasopressin in scleroderma pathogenesis

    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

    Randomized Open Label Phase II/III Multicenter of High Dose Immunosuppressive Therapy (SCOT)

    Closed

    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

    Educational Activities

    The center has been active with the 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:

    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.
    • Naomi Amudala, CRNP, MSN

    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
    • Robyn T. Domsic, M.D., M.P.H.

    New Patient Appointments: (412) 864-7055

    Return Patient Appointments: (412) 647-6700

    Specialists:

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


    Research Information: Krist Kong (412) 648-7040 or Maureen Laffoon (412) 648-7871

    Studies

    Status

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

    Actively Recruiting

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

    Actively Recruiting

    AVID200 Phase 1 Open-Label Study to Determine the Safety and Tolerability of AVID200 in Diffuse Cutaneous Systemic Sclerosis

    Actively Recruiting

    University of Pittsburgh Children's Hospital

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

    One Children's Hospital Way
    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, M.D., Director
    Kaila Schollaert-Fitch, M.A., Clinical Research Coordinator
    Emily Mirizio, Research Technician

    Appointments: (412) 692-5081
    Research Inquiries: (412) 692-6478 scleroderma@chp.edu

    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 Sub-studies for Localized Scleroderma (LOCUS-2)

    Closed to Enrollment/In Data Analysis 

    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

    Enrollment begins March 2019  

    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: (843) 792-3484
    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., M.S.C.R.
    • Aiken McNair, P.A.
    • Celine Ward, M.D.
    • Katherine Silver, M.D., M.S.C.R.
    • DeAnna Baker Frost, M.D., Ph.D.

    Gastroenterology:

    • Pooja S. Elias, M.D.

    Pulmonary Medicine/Pulmonary Hypertension:

    • J. Terrill Huggins, M.D.
    • Rachana Krishna, M.D.
    • Rahul Argula, M.D.

    Cardiology:

    • 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 
    Debendra Pattanaik, M.D. 
    Syed Raza, M.D. 
    Bradley Postlethwaite, M.D.
    Vaishnavi Pulusani, M.D.
    Linda Myers, M.D. (Pediatric only)
    Monica Brown, M.D. (Pediatric only)

    Clinical Practice

    University Methodist Medical Practice
    1211 Union Avenue, Ste. 200, Memphis, TN 38104
    (901) 525-0278 - Appointments
    Debendra Pattanaik, M.D.
    Titilioa Akhigbe, M.D. 

    Regional One Health – (Medplex)
    880 Madison, Ste. 4E01, Memphis, TN 38103
    (901) 545-6969 - Appointments
    Arnold Postlethwaite, M.D. 
    Syed Raza, M.D. 

    UT Regional One Health 
    6555 Quince Rd., Memphis, TN 38119
    (901) 515-3150 - Appointments
    Syed Raza, M.D.

    University Clinical Health
    6401 Poplar Avenue, Ste. 190, Memphis, TN 38119
    (901) 866-8700 – Appointments
    Bradley Postlethwaite, M.D. 
    Vaishnavi Pulusani, M.D. 

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

    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, diffuse and limited scleroderma. Call office for hours

    Clinic Hours
    Monday - Friday 8 a.m. - 5 p.m.

    Clinic Appointments: (713) 486-3100
    Clinic Fax: (713) 512-2246


    Participating Physicians:

    • Maureen Mayes, M.D., M.P.H.
    • Shervin Assassi, M.D., M.S.
    • Brian Skaug, M.D., Ph.D.

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

     

    Studies

    Status

    ACT 145604(Sanofi)

    Active, enrolling

    GENISOS (Longitudinal Study of Early Scleroderma)

    Active, enrolling

    Scleroderma Family Registry and DNA Repository

    Active, enrolling

    RESOLVE (Corbus)

    Active, enrolling

    BRAVOS (Immune Tolerance Network through the University of Michigan and NIH)

    Active, enrolling

    ASC01 – Rituximab in SSc-Pulmonary Arterial Hypertension

    Active, enrolling

    STAT study – Stem Cell Transplant study in early diffuse scleroderma

    Active, enrolling

    Scleroderma Lung Study III (SLS III)- NIH through UCLA

    Active, enrolling

    Senscis Study – early SSc lung disease

    Active, filled

    CATALYST (Reata) – Pulmonary hypertension in SSc

    Active, enrolling

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    Utah

    University of Utah Scleroderma CenterSalt Lake City

    University of Utah Scleroderma Center
    Chronic Disease Clinic
    Rheumatology/Pulmonology

    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, M.D.
     
    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, M.D.
    • Gastroenterology:  Andrew Gawron, M.D.
    • Oncology:  Daniel Couriel, M.D.
    Studies Status

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

    OPEN

    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)

    ACTIVE

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

    ACTIVE

    Small intestinal bacterial overgrowth (SIBO) in systemic sclerosis

    ENROLLING

     

    Prospective Registry of Early Systemic Sclerosis, (PRESS) Phenotypic, Serologic, and Biomarker/Genetic Characteristics of Early Diffuse Cutaneous Systemic Sclerosis ACTIVE
    Monitoring Outcomes of Treatment for Raynaud’s Phenomenon Symptoms (MOToR) ACTIVE
    Collaborative National Quality and Efficacy Registry for Scleroderma (CONQUER) ACTIVE
    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 OPEN LABEL EXTENSION
    A Multicenter, Randomized, Double-Blind, Placebo-Controlled Phase 3 Trial to Evaluate Efficacy and Safety of Lenabasum in Diffuse Cutaneous Systemic Sclerosis ACTIVE
    Validation of the preliminary Assessment of Scleroderma associated Raynaud’s Phenomenon (ASRAP) questionnaire ENROLLMENT PENDING

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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)
    • Demet Toprak, MD (Pulmonology))
    • Ramesh Iyer, MD (Radiology)
    • Margaret Rosenfeld, MD (Pulmonology)
    • Heather Brandling-Bennett, MD (Dermatology)
    • Lusine Ambartsumyan, MD (Gastroenterology)
    • Paul Carpenter, 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
    CARRA Registry for jSSc and Localized SSc (SCORE) - Active 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
    Medical College of Wisconsin
    HUB, Department of Rheumatology, A8664
    8701 Watertown Plank Road
    Milwaukee, WI  53226

    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; Pediatric evaluation on referral from Rheumatologist)
    Any additional questions can be directed to Dr. Csuka’s Administrative Assistant, Carla Clark at (414) 955-7023 or Amy Blair, Clinical Research Coordinator (414) 955 7007.

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

    Research Information:
    Amy Blair, Clinical Research Coordinator (414) 955-7007, ablair@mcw.edu or Carla Clark (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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