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(Arizona)
Mayo Clinic Arizona
13400 E. Shea Blvd.
Scottsdale, AZ 85259
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.
Mayo Clinic’s Campus in Arizona Patient and Visitor Guide
https://www.mayoclinic.org/patient-visitor-guide/arizona
Becoming a Patient at Mayo Clinic’s Campus in Arizona
https://www.mayoclinic.org/patient-visitor-guide/arizona/becoming-a-patient
#1 Hospital in Arizona - Mayo Clinic
https://www.mayoclinic.org/arizona
Mayo Clinic's core and primary value is the needs of the patient come first. Mayo Clinic is recognized for serving the needs of patients with serious and complex diseases. At the Mayo Clinic in Arizona Scleroderma program rheumatologists work in a team environment to provide state-of-the-art diagnosis and treatment tailored to the individual with newly diagnosed or established illness. For patients attending the program long distance, their initial appointment with Rheumatology and consultations with the program’s multidisciplinary team and testing are typically accomplished for more complex illness in less than 5 days rather than weeks or months.
The Mayo Clinic in Arizona Scleroderma program is pleased to announce its 2019 endowment by the James C. and Norma I. Smith Foundation bringing together the art of care with the science of medicine in serving the needs of patients with scleroderma. Please watch for Mayo Clinic in Arizona site specific clinical trials commencing in 2019 aimed at accelerating the discovery of new treatments for scleroderma.
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
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)
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 |
California
Loma Linda University Scleroderma Center
Loma Linda University Faculty Medical Office
11370 Anderson Street, Suite 3650
Loma Linda, CA 92354
(909) 558-2860
Director: Vaneet K Sandhu, M.D., F.A.C.R., Rh.M.S.U.S.
Associate Director: Karina Torralba, M.D., F.A.C.R., M.A.C.M., Rh.M.S.U.S.
Physicians affiliated with this center:
Rheumatology:
Vaneet K Sandhu, M.D., F.A.C.R.
Karina Torralba, M.D. F.A.C.R., M.A.C.M., Rh.M.S.U.S.
Mehrnaz Hojjati, M.D., F.A.C.R.
Christina Downey, M.D., F.A.C.R.
Gastroenterology:
Yan Zhao, M.D., Ph.D.
Tejinder Kalra, M.D., F.A.C.G.
Terence Lewis, M.B.B.S., F.R.A.C.P., F.R.C.P.C., F.A.C.G., A.G.A.F.
Andrew Wright, M.D.
Pulmonary Hypertension:
Paresh Giri, M.D., F.C.C.P.
Interstitial Lung Disease:
Niranjan Jeganathan, M.D., M.S., F.C.C.P.
Cardiology:
Purvi Parwani, M.B.B.S., F.A.C.C.
Dmitry Abramov, M.D.
Evangelos Diamantakos, D.O., F.A.C.C.
Vinisha Garg, M.D., F.A.C.C.
Dermatology:
Betsy Furukawa, M.D., F.A.A.D.
Nancy Anderson, M.D., F.A.A.D.
Janiene Luke, M.D., MS, FAAD
Ongoing Studies:
Studies |
Status |
Southern California Scleroderma Registry (SCOSR) |
Active, Recruiting |
Southern California Interstitial Lung Disease Registry |
Active, Recruiting |
Stanford-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 |
San 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
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
- UCSF Scleroderma Center: http://www.ucsfhealth.org/clinics/scleroderma/
- Interstitial Lung Disease Clinic: www.ucsfhealth.org/ild
- Pulmonary Hypertension Clinic: http://www.ucsfhealth.org/clinics/pulmonary_hypertension_clinic/
Los Angeles
UCLA Scleroderma Program
Director: Elizabeth Volkmann, M.D., M.S.
Clinic Address:
200 UCLA Medical Plaza, Suite 365
Los Angeles, CA 90095
Contact number for appointments: (310) 825-2448
Website for UCLA Rheumatology: https://www.uclahealth.org/rheumatology/
Website for UCLA CTD-ILD Program: https://www.uclahealth.org/ctd-ild/
Website for Research: https://www.uclahealth.org/rheumatology/Research
Rheumatologists:
Philip Clements, M.D., M.P.H.
Suzanne Kafaja, M.D.
Elizabeth Volkmann, M.D., M.S.
Pulmonologists:
John Belperio, M.D. (Interstitial lung disease, lung transplantation)
Richard Channick, M.D. (Pulmonary hypertension)
Ariss DerHovanessian, M.D. (Pulmonary hypertension, lung transplantation)
Joseph Lynch, M.D. (Interstitial lung disease, lung transplantation)
Allison Ramsey, M.D. (Interstitial lung disease, lung transplantation)
Michael Roth, M.D. (Interstitial lung disease)
Rajan Saggar, M.D. (Pulmonary hypertension, lung transplantation)
David Sayah, M.D. (Interstitial lung disease, lung transplantation)
Shelley Shapiro, M.D. (Pulmonary hypertension)
Mike Shino, M.D. (Lung transplantation)
Sam Weigt, M.D., M.S. (Interstitial lung disease, lung transplantation)
Radiologists:
Jonathan Goldin, M.D., Ph.D.
Lila Pourzand, M.D.
Rob Suh, M.D.
Cardiologists:
Eric Yang, M.D.
Gastroenterologists:
Jeffrey Conklin, M.D.
Terri Getzug, M.D.
Kevin Ghassemi, M.D.
Cedars-Sinai Scleroderma Center
Office practice location:
8723 Alden Drive, Suite 250
Los Angeles, CA 90048
Phone: (310) 423-6257
Fax (e-fax): (310) 423-6287
Physician Associated with this center: Francesco Boin, M.D., Director, Division of Rheumatology
Colorado
University of Colorado Scleroderma Program
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:
- Jason Kolfenbach, M.D. (U of CO) - Rheumatology
- Melissa Griffith, M.D. - Rheumatology
- Todd Bull, M.D. - Pulmonary; Pulmonary Hypertension
- David Badesch, M.D. - Pulmonary; Pulmonary Hypertension
- Joyce Lee, M.D. - Pulmonary; Interstitial Lung Disease
- Bridget Graney, M.D. - Pulmonary; Interstitial Lung Disease
- Paul Menard-Katcher, M.D. - Gastroenterology
- Sarah Funk, R.D., C.N.S.C. - Clinical Dietician
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 |
National Jewish Health
Scleroderma Program
Main Campus
1400 Jackson St. Denver, CO 80206
njhealth.org/scleroderma
The Scleroderma Program at National Jewish Health offers patients comprehensive care and support. Our multidisciplinary scleroderma team includes specialists in rheumatology, interstitial lung disease, pulmonary hypertension, cardiology, gastroenterology and nephrology. We also offer the latest scleroderma clinical trials.
Appointments (patient self-referrals): (800) 621-0505
Physician Referrals: (800) 652-9555
Clinical Trials: njhealth.org/clinicaltrials
Physicians Affiliated with the Scleroderma Program:
Mehrnaz Maleki, M.D. - Rheumatology
Liudmila Kastsianok, M.D. - Rheumatology
Jeffrey Swigris, M.D. - Interstitial Lung Disease
M. Patricia George, M.D. - Pulmonary Hypertension
Arash Babaei, M.D. - Gastroenterology
Darlene Kim, M.D. - Cardiology
National Jewish Health Resources
Connecticut
Farmington
UConn Health
Outpatient Pavilion
135 Dowling Way
Farmington, CT 06030
Website: https://health.uconn.edu/msi/clinical-services/rheumatology/
For more information or to make an appointment, call 860-679-2160 or 800-535-6232
Research Information: Santhanam Lakshminarayanan, MD 860-679-3605
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 |
Closed |
North Haven/New Haven
Yale Scleroderma Program
For referrals or to make an appointment:
Call Marie Frank
Phone: (203) 785-2454
Fax: (203) 785-7053
marie.frank@yale.edu
Rheumatology Clinic Location: Yale North Haven Medical Center
6 Devine St.
North Haven, CT 06473
Website: https://medicine.yale.edu/intmed/raci/rheumatology/programs/scleroderma/sclero/
Treats all forms of scleroderma, adults only
Physicians & Affiliated Health Care Providers
- Rheumatology
- Monique Hinchcliff, MD, MS (Director of Yale Scleroderma Program)
- Victoria Esparo, APRN
- Anesthesiology
- Ruchi Sharma, MD
- Cardiology
- Lavanya Bellumkonda, MD
- Margaret Furman, MD, MPH
- Edward Miller, MD, PhD
- Dermatology
- Ian Odell, MD, PhD
- Sarika Ramachandran, MD
- Kathleen Suozzi, MD
- Digestive Diseases
- Amir Masoud, MD, MBBS
- Mayra Sanchez, MD
- Urogynecology
- Hulda Einarsdottir, MD
- Nephrology
- Randy Luciano, MD, PhD
- Pulmonary Medicine
- Danielle Antin-Ozerkis, MD
- Mridu Gulati, MD
- Erica Herzog, MD, PhD
- Pulmonary Vascular Medicine
- Philip Joseph, MD
- Inderjit Singh, MD, MCRP
- Social Work
- Deborah Smith, LCSW
- Dietician
- Laura Wilson, RD
Pulmonary Clinic Location: Yale Interstitial Lung Disease Center of Excellence
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
Clinical Studies |
Status |
Yale Rheumatology Bio-registry and Bio-repository |
Recruiting |
Wnt-beta catenin target genes in macrophages and fibrosis |
Recruiting |
KD025 and Diffuse Cutaneous Systemic Sclerosis |
Recruiting |
If you would like to learn more about research or participate, please contact:
Yale Rheumatology Research
Shannon Teaw
scleroderma@yale.edu
(203) 737-5571
Research Website:
www.yale.edu/lab/hinchcliff/
Twitter: @YaleScleroderma
District of Columbia
Washington, 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 |
Illinois
Chicago
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 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.
- Reem Jan, M.D.
- Kim Trotter, M.D.
- Kichul Ko, M.D.
- Vladimir Liarski, M.D..
Appointments: (773) 702-6119 or 1-888-824-0200
Research Information: Marcus Clark, MD at
mclark@medicine.bsd.uchicago.edu
Clinic 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:
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 |
Louisiana
New Orleans
Tulane University School of Medicine - Tulane Lung Center
1430 Tulane Ave, 7th floor
Phone: (504) 988-8600
(ask for Mona or Shannon)
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
- Monique Brown, R.N. Nurse Coordinator for University Medical Center CPHC
- Mona Crum, 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
- Monika Kowalczyk, M.D. - Gastroenterology
- Tamarin Hennebury, L.O.T.R. - Director of Therapeutic Wellness (Physical and Occupational Therapy)
- 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 Support Group Leaders, Ms. Paige St Pierre, kpmec@viscom.net (985) 696 5409 and Ms. Joy Mitchell, (504) 301-7737 joymitchell78@gmail.com or Ms. Paige St. Pierre, Support Group Co-Leader (985) 696-5409 paige.stpierre@yahoo.com.
Maryland
Baltimore
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 |
Massachusetts
Boston
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:
Michael York, M.D.
Maarcin Trojanowski, M.D.
Andreea Bujor M.D., Ph.D.
Pulmonary Medicine/Pulmonary Hypertension/Interstitial Lung Disease:
Harrison Farber, M.D.
Arthur Theodore, M.D.
Dermatology/Dermatopathology:
Christina Lam, M.D.
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 |
Michigan
Ann 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 |
|
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.
|
|
|
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
|
PI: Dr. Khanna |
|
BRAVOS |
Evaluation of Brentuximab Vedotin for Diffuse Cutaneous Systemic Sclerosis: A Phase ½ Multicenter Randomized, Double Blinded, Safety Study
|
Recruiting 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
|
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.
|
Dr. Nagaraja |
|
JOINT CONTRACTURES |
|||
REACH |
Novel Rehabilitation Strategies to improve are function in patients with Scleroderma
|
Dr. Khanna/Dr. Murphy |
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 |
Mayo Clinic (Rochester)
Clinic contact: Appointments are by Referral Only
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
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
Dr. Jay Ryu, Dr. Teng Moua, Dr. Misbah Baqir, Dr. Sanjay Kalra
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.
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 |
New Jersey
Hackensack
Division of Pediatric Rheumatology, Joseph M. Sanzari Children’s Hospital
Hackensack University Medical Center
Hackensack Meridian School of Medicine at Seton Hall University
Pediatric Rheumatology Clinic
30 Prospect Ave., Hackensack, NJ 07601
Phone: 551-996-5306 (appointments and information - by referral only)
Fax: 201-996-9815
Clinic Information:
Patients who have localized scleroderma/morphea, systemic sclerosis, stiff skin syndrome, 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-Friday: 830 a.m. - 5 p.m.
Physicians affiliated with this center:
Rheumatology:
- Suzanne C. Li, M.D., Ph.D.
- Yukiko Kimura, M.D.
- A. Carmelo Gironella, M.D.
- Ginger Janow, M.D.
- Sivia Lapidus, 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 |
Evaluation of Ultrasound Imaging for Localized Scleroderma monitoring | Actively Recruiting |
A Prospective Observational Study Comparing the Non-inferiority of Mycophenolate Mofetil to Methotrexate for the Treatment of Juvenile Localized Scleroderma | Recruitment to begin in 2019 |
Juvenile Localized Scleroderma Consensus Treatment Plan pilot study | Closed to enrollment, in data analysis |
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
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: |
opened since 2017 |
Merck: |
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 |
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 |
Ballston Spa
Steffens Scleroderma Center
Albany Med Malta Multispecialty
6 Medical Park Drive, Suite 203, MC-200
Ballston Spa, NY 12020
Physicians at this center:
- Lee Shapiro, M.D.
To schedule an appointment: (518) 262-5345
New York City
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
- Dr. David Fernandez
Appointments: Ebony Jackson (212) 606-1173; Dorcas Mcrae (212) 774-2434
Physician Inquiries: Dr. Robert Spiera (212) 774-2048; Dr. Jessica Gordon (212) 606-1173; Dr. Lindsay Lally (212) 774-2434:Dr. David Fernandez (212) 606-1501
Research Information: Elizabeth Soto-Cardona, M.P.H., Center Manager (212) 774-2048
Beemnet Amdemicael (212) 774-2123 or Mosammed Kabir (212) 774-7194, Jesse Ojeda (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) | Completed | ||
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.(HSS SCLERODERMA REGISTRY) | Active, recruiting | ||
Prospective Registry of Early Systemic Sclerosis (PRESS) This registry aims to better understand early diffuse systemic sclerosis by capturing clinical data, basic science markers, and candidate genes from patients. All patients that were diagnosed with diffuse scleroderma in the past two years and are 18 years or older are eligible to be enrolled in this registry. Study visits will occur approximately every 6 months and will involve questionnaires, a physical examination, and blood draws for research purposes. |
Active |
||
A Phase 1 Open-Labeled Study to Determine the Safety and Tolerability of AVID200, a Transforming Growth Factor β (TGFβ) Inhibitor, in Patients with Diffuse Cutaneous Systemic Sclerosis This Phase 1 study seeks to evaluate the safety and tolerability of sequential escalating doses of AVID200 administered once every 2 weeks (Q2W) by 1-hour intravenous (IV) infusion to patients with diffuse cutaneous systemic sclerosis (dcSSc). We will identify a potential effective range of tolerated doses to be further evaluated in a future Phase 2 trial |
Actively Recruiting Contact: Beemnet Amdemicael (212) 774-2123 |
||
A Randomized, Double-Blind, Placebo-Controlled Study of Belimumab and Rituximab Combination Therapy for the Treatment of Diffuse Cutaneous Systemic Sclerosis This is a randomized, double-blind, placebo-controlled study to assess efficacy of Rituximab and Belimumab combination therapy in patients with diffuse cutaneous Systemic sclerosis (SSc, Scleroderma). |
Actively recruiting Contact: Beemnet Amdemicael (212) 774-2123 |
||
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 This is a study that seeks to evaluate the efficacy of Iloprost compared to placebo on the change in the weekly frequency of symptomatic RP attacks from baseline in subjects with symptomatic RP secondary to SSc. |
Actively Recruiting Contact: Beemnet Amdemicael (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: Jesse Ojeda (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 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 |
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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 |
Columbia 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 |
North Carolina
Durham
Duke Health
Duke Clinic IJ, Durham, NC 27710
As one of the nation’s leading rheumatology centers, Duke specializes in diagnosing and treating scleroderma. Additionally, Duke is one of the few centers in the nation to offer stem cell transplantation as part of your treatment for scleroderma. We are located in Durham, NC.
To learn more about scleroderma treatment options at Duke, please visit us at:
www.dukemedicine.org/treatments/inflammatory-and-immune-disorders/scleroderma
To learn more bone marrow transplant or stem cell transplant as an option for scleroderma, please visit us at: https://www.dukehealth.org/treatments/cancer/adult-bone-marrow-transplant
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, M.D. (Rheumatology)
- Terry Fortin, M.D. (Pulmonary Hypertension)
- Lake Morrison, M.D. (Pulmonary Fibrosis)
- Rahul Shimpi, M.D. (Gastroenterology)
- Rambi Cardones, M.D. (Dermatology)
- Gwynn Long, M.D. (Cellular Therapy/Stem Cell Transplant)
For appointments in our Rheumatology Clinic at Duke: (919) 684-4499
For appointments in our Adult Blood & Marrow Transplant Clinic at Duke: (919) 684-8964
Physicians Inquiries and Research information: Ankoor Shah, MD (919) 684-4499
Study |
Description |
Recruitment Status |
BRAVOS |
Phase I study of brentuximab vedotin in patients with early diffuse cutaneous systemic sclerosis |
Active, Recruiting |
Scleroderma Registry |
Ongoing clinical registry of patients with systemic sclerosis |
Active, Recruiting |
Affinergy |
Using phage display technology, we are looking at discovering new antibodies to aid in diagnosis and prognosis in systemic sclerosis |
Active, Recruiting |
CATALYST |
A phase II/III study of bardoxolone methyl in patients with pulmonary hypertension associated with connective tissue disease |
Active, Recruiting |
SENSCIS |
Phase III study of nintedanib in the treatment of systemic sclerosis related interstitial lung disease |
Active, Closed to Recruitment |
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:
- Orthopaedic & Rheumatologic Institute: Soumya Chatterjee, M.D.
- Digestive Disease Surgical Institute: Scott Gabbard, M.D., Donald Kirby, M.D., Prashanthi Thota, M.D.
- Respiratory Institute: Kristin Highland, M.D., Joseph Parambil, M.D., Adriano Tonelli, M.D.
- Dermatology & Plastic Surgery Institute: Anthony Fernandez, M.D., Mark Hendrickson, M.D., Raymond Isakov, M.D., Melissa Piliang, M.D.
- Pediatric Institute: Andrew Zeft, M.D., M.P.H., Elizabeth Brooks, M.D., Ph.D., Sirada Panupattanapong, M.D.
- Heart & Vascular Institute: Michael Faulx, M.D., Eileen Hsich, M.D., Maria Mountis, D.O.
- Cole Eye Institute: Jeffrey Goshe, M.D., Careen Lowder, M.D., Lisa Lystad, M.D.
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 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). |
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.
Pennsylvania
Philadelphia
The Scleroderma Center of Thomas Jefferson University
211 South 9th Street Suite 600, Philadelphia, PA 19107
(Clinical Offices)
Suite 509, Bluemle Life Sciences Building
(Research Laboratories)
Appointments: (215) 955-8430*
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, Elizabeth.
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, Elizabeth.
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. | Active. Not enrrolling |
A prospective observational study of mycophenolate treatment for Scleroderma. | Actively enrolling |
Tocilizumab vs Placebo in patients with Systemic Sclerosis (Phase III) | Completed. Not 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.
For appointments, call (800) 789-7366; Fax: (215) 349-5703
Research Inquiries: rheumatologyresearch@uphs.upenn.edu
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 | Recruitment Completed |
Genome Research in African American Scleroderma Patients (GRASP) Study | Actively Recruiting |
Phase 1 Open-Label Study to Determine the Safety and Tolerability of AVID200, a Transforming Growth Factor β Inhibitor, in Patients with Diffuse Cutaneous Systemic Sclerosis | Actively Recruiting |
National Quality and Efficacy Registry for Tracking Disease Progression in Patients with Systemic Sclerosis (CONQUER) | Actively Recruiting |
Double-Blind, Randomized, Placebo-Controlled, Phase 3 Study Evaluating the Safety and Efficacy of Intravenous Iloprost in Subjects With Systemic Sclerosis Experiencing Symptomatic Digital Ischemic Episodes | Open September 2020 |
Randomized, Multicenter, Double-Blind, Placebo Controlled, Phase 2 Study to Evaluate the Efficacy and Safety of IgPro10 (Intravenous Immunoglobulin, Privigen®) for the Treatment of Adults with Systemic Sclerosis | Open May 2020 |
Pittsburgh
UPMC & 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 |
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 |
South Carolina
Charleston
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 |
Tennessee
Memphis
University of Tennessee Health Science Center
956 Court Avenue, Room G326, Memphis, TN 38163
Phone: (901) 448-5774 (Academic Office)
www.uthsc.edu
(901) 525-0278 - Appointments
UT Regional One Health
Syed Raza, M.D.
University Clinical Health
Bradley Postlethwaite, M.D.
LeBonheur Children’s Hospital
Our physicians specialize in all connective tissue diseases with emphasis on scleroderma, rheumatoid arthritis, and systemic lupus erythematosus.
Current Research
For specific information regarding studies please call (901) 448-5774.
Texas
Houston
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 |
Utah
Salt 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 |
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 |
Virginia 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.
- Erin Bauer, M.D.
- Amish Dave, M.D.
- Elizabeth Jernsberg, M.D.
- Meredith Morcos, M.D.
- Vivian Stone, M.D..
- Su Yin, M.D.
All scleroderma trials at Virginia Mason are currently on hold, please call (206) 223-6824 for more information.
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.
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, Karen Roberts at (414) 955-7027 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 Karen Roberts (414) 955-7027
Studies | Status |
A Phase 2, Randomized, Placebo-controlled, Double-blind, Open-label Extension Multicenter Study to Evaluate the Efficacy and Safety of KD025 in Subjects with Diffuse Cutaneous Systemic Sclerosis | Open |
A Multicenter, Double-Blind, Randomized, Placebo-Controlled, Phase 3 Study Evaluating the Safety and Efficacy of Intravenous Iloprost in Subjects With Systemic Sclerosis Experiencing Symptomatic Digital Ischemic Episodes | Open |