Myopathy associated with systemic sclerosis (SSc)
EUSTAR-SCTC sub-cohort initiative
Britta Maurer1, Rucsandra Dobrota1, Veronika Jaeger2, Lorinda Chung3, Vivien Hsu4, Ulrich A Walker2, Oliver Distler1, on behalf of EUSTAR-SCTC
1Division of Rheumatology, University Hospital Zurich
2Division of Rheumatology, University Hospital Basel
3Division of Rheumatology and Immunology, Stanford University, CA, USA
4Division of Rheumatology, Adult Clinical Research Center, Rutgers-RWJ Medical School, New Brunswick, NJ, USA
In SSc, muscle disease is common (5-96%) and results in significant disability. The varying prevalence (5-96%) reflects the lack of diagnostic consensus criteria and established diagnostic tools.
The joint EUSTAR-SCTC initiative addresses those unmet needs by evaluating the clinical course, key features and prognosis of SSc-associated myopathy in a large multicenter international observational SSc cohort.
Establishment of a SSc-myopathy sub-cohort
- by extending the EUSTAR MEDS online for myositis-related items
- based on extensive literature review and expert opinion.
Inclusion criteria (≥ 1)
- elevated serum levels of muscle enzymes or
- proximal muscle weakness on physical examination or
- muscle atrophy on physical examination or
- positive myositis-associated autoantibodies.
Collection of biosamples in parallel, yet independently from the observational study.
Interim Analysis October 2015
- 161 patients from 22 centers enrolled (17 Europe, 4 US, 1 South America)
- Approx. 100 patients with ≥ 1 follow up visit(s)
Future Activities (next 12 months)
Further expansion of the EUSTAR-SCTC myopathy sub-cohort with
- longitudinal data collection and linked biosampling in order to define
- clinical course, key features and prognosis
- pathophysiologic mechanisms and biomarkers
- appropriate diagnostic tools
- treatment strategies.
How to get involved?
Join EUSTAR (http://www.eustar.org/)
- Templates for ethics approval and patients’ information available
- Check “participate myopathy study” on the EUSTAR web-page
Contact Britta Maurer (firstname.lastname@example.org) on behalf of the EUSTAR-SCTC steering committee.