Since 2004, the University of Michigan Scleroderma Program, based in the Department of Internal Medicine’s Division of Rheumatology, has been committed to developing effective therapies for scleroderma and its complications, as well as to research the causes and mechanisms of the disease.
The program provides clinical care to patients throughout the region, primarily on a consultative basis, with an emphasis on cost-effective outpatient management and community engagement with both patients and physicians. It also serves as an international referral center for care including experimental treatments designed to improve patient quality of life and extend their survival.
Program Director Dinesh Khanna, M.D., M.S., an internationally-recognized authority in the field, collaborates with a team including faculty members in Adult Rheumatology, Pulmonary Medicine, Cardiology/Pulmonary Hypertension, Dermatology, Hand Surgery and Occupational Therapy.
2016 Clinical Highlights
Scleroderma Peer Mentor Program
The Scleroderma Program was selected in 2016 to pilot U-M’s first Outpatient Peer Mentor Program. The program is designed to empower patients with scleroderma to take control of their lives and their health care. Trained peer mentors help patients face issues related to their disease, assist them in evaluating treatment alternatives, help them cope with the emotional aspects of scleroderma, and serve as positive role models. Volunteer peer mentors receive training through the U-M Health System’s Patient and Family Centered Care program.
The Scleroderma Peer Mentor Program is planning to launch a new scleroderma patient education webpage this summer-2017. The webpage will include an online Peer Mentor Matching Form, where new patients can sign up for a mentor. The page will also feature a 5-minute video designed to educate new scleroderma patients about their disease, what to expect in typical clinical visits, as well as the latest breakthroughs in U-M’s state-of-the-art research in scleroderma.
The U-M Scleroderma Program offers a number of clinical trials focused on various aspects of scleroderma including skin conditions, digital ulcers, lung fibrosis and joint contractures. Physicians wishing to find out more about scleroderma research underway at the University of Michigan should contact Dr. Dinesh Khanna at firstname.lastname@example.org(link sends e-mail) or Erica Bush at email@example.com(link sends e-mail).
Highlights of currently available U-M led, investigator-initiated trials in scleroderma:
- The ASSET trial(link is external) (Abatacept Systemic SclErossis): A multi-center study to evaluate abatacept (Orencia®), which is FDA approved for the treatment of rheumatoid arthritis, to reduce the symptoms of sclerosis (www.scleroderma-asset-study.org(link is external)).
- The RESCUE trial: A multi-center pilot study to assess the efficacy and safety of riociguat in scleroderma-associated digital ulcers.
- A trial of novel rehabilitation strategies to improve arm function in patients with scleroderma.
2016 Research Highlights
Numerous U-M-authored articles were featured in high-profile journals in 2016, including:
- The Journal of the American Medical Association (May) published results of two U-M-led studies of the impact of macitentan in decreasing the number of new digital ulcers in systemic sclerosis patients.
- The Lancet (May) published findings from the FaSScinate trial – a phase-two trial of tocilizumab for the treatment of systemic sclerosis.
- The Journal of Rheumatology (July) – Published results of the LOTUSS trial, an open-label Phase II pilot study of the safety and tolerability of Perfenidone in patients with Scleroderma-associated Interstitial Lung Disease.
- Current Treatment Options in Rheumatology (July) – Published a U-M –led review of currently available treatments for hand impairment in systemic sclerosis.
- The Journal of Scleroderma and Related Disorders (June)– published a U-M-authored review of emerging strategies for the treatment of systemic sclerosis.
Also in 2016, Dr. Khanna and the U-M Scleroderma program led the development of the American College of Rheumatology’s Provisional Composite Response Index for Clinical Trials in Early Diffuse Cutaneous Systemic Sclerosis (Arthritis Rheumatol (February), which has the potential to revolutionize the conduct of clinical trials in scleroderma.
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