Membership Application

Calcinosis can be a devastating complication in juvenile and adult dermatomyositis leading to significant morbidity. Since there are no effective therapies for calcinosis, the development of novel therapeutic agents is desperately needed. The aims of this group are to advance our understanding of the etiology, pathogenesis, assessment, and treatment of calcinosis in juvenile and adult dermatomyositis.

The Data Sharing Scientific Interest Group would focus on optimizing data for research collaborations within IMACS, which may include developing common data elements, exploring novel database platforms to optimize data sharing, as well as exploring the Common Data Model. The Common Data Model provides a standardized data dictionary and database schema that allows large-scale network studies to be performed without the need for data to be shared between institutions. The Data Sharing SIG would serve as a resource to educate interested IMACS members on the benefits and implementation of such a model at their home institution. It would also serve as a means to ensure when new myositis-specific terms are developed, we are all in agreement as to the specific vocabulary terms.

The European Initiative, called Single Hub and Access point for pediatric Rheumatology in Europe (SHARE), developed recommendations to optimize and disseminate diagnostic and management regimens in Europe, for several conditions, including juvenile dermatomyositis (JDM). The aims of these recommendations were to develop the ‘best practices’ for the treatment for these conditions, to produce a standard of care or ‘best practices’ for patient care throughout Europe. The IMACS SHARE Scientific Interest Group was formed to review and augment the JDM SHARE recommendations and consider their applicability and feasibility internationally, including for patients outside of Europe.

Sporadic Inclusion body myositis (IBM) is a gradually progressive idiopathic inflammatory myopathy, which typically leads to severe disability, including difficulty using hands, impaired mobility, and dysphagia. There is currently no proven treatment for patients with IBM. Lack of validated outcome measures and objective biomarkers are major limitations in IBM clinical trials. This group will focus on examining outcome measures in IBM in order to optimize them for future clinical trials.

The proper billing and coding of a disease is important for the management of patients, and for research. This group is working to optimize the coding systems that are of importance to the idiopathic inflammatory myopathies. We have previously received ICD-10-CM approval and implementation for codes for dermatomyositis and dermatomyositis without myopathy, and are working on additional ICD coding issues.

The discovery of new myositis autoantibodies that identify distinct patterns of disease within the myositis spectrum has been a major advance in the field in recent years. The availability of reliable assays to measure myositis autoantibodies in routine clinical practice is an ongoing unmet need. This group will promote knowledge to take full advantage of the clinical utility of myositis autoantibody testing, and provide a forum for interchange of ideas and collaboration to identify important areas for future research.

Several genetic risk factors have been identified in myositis, including genetic variants that discriminate between clinically and serologically defined subgroups. Some of these genetic variants overlap with those reported in other autoimmune disorders. Increased knowledge of genetic risk factors may increase understanding of the etiology and pathogenesis of myositis, enabling more stratified medicine. This group aims to identify genetic risk and protective factors for myositis, including those relating to specific phenotypes, environmental exposures, and ethnic groups.

IMACS has a long history of working to develop and validate disease activity and damage assessment tools and myositis response criteria. The objectives of this SIG will be to continue work on development and validation of new assessment measures in myositis, including those utilizing novel technologies.

This group is devoted to studying the effect of exercise therapy and rehabilitation on the disease and vice versa in juvenile and adult myositis. To this end, the group has focused on developing and validating measures for fatigue and endurance, muscle strength testing, and functional testing for juvenile and adult myositis that can be used as endpoints in such studies. Currently, a large focus of the group’s work is to develop International Guidelines on Exercise for all forms of myositis.

Telemedicine can play an important role in the care and support of people living with IIM. Visiting a specialist clinic often involves travelling long distances, a journey which can be made more difficult by muscle weakness, fatigue, and other disability. The COVID pandemic, and the reduction in face-to-face activity at many centers, has drawn this into even sharper focus. However, the opportunities of telemedicine also bring potential risks which need to be considered. The aim of this group is to agree best practice guidelines for conducting telemedicine consultations in IIM clinics and support the increased use of telemedicine in the routine care of our patients.