If you haven't already done so, please review the benefits of IMACS membership All required fields have the word (Required) after the label. Optional information is used to facilitate use of information on IMACS members. Demographics Applicant Information Membership Type Membership Type (Required): Associate Associate Members are trainee members (students, fellows), research assistants, or members of non-profit or for-profit organizations. Full Full Members may participate in IMACS committees (voted positions), and participate in voting on IMACS committee members and policies. First Name (Required) Last Name (Required) Degree(s) (PhD, MD, ...) 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Myositis Research Are you interested in Myositis research? Are you interested in Myositis research? Yes No What areas of myositis research interest you? Select all that apply: What areas of myositis research interest you? Select all that apply: Animal models Clinical presentation and manifestations Clinical trials Diagnostic/Classification/Subclassification Criteria Disease assessment Environmental factors / myotoxins Epidemiology Immunology Muscle molecular biology, biochemistry or function Muscle structure or ultrastructure Genetic risk factors Natural history of disease Outcomes research Pathogenesis of disease Pathology Pre-clinical therapeutic development Therapy / prognosis Other, please specify: Myositis Patients Are you responsible for the clinical area of myositis patients? Are you responsible for the clinical area of myositis patients? Yes No What types of myositis patients are under your care? What types of myositis patients are under your care? Adult Myositis Juvenile Myositis Both Please select all clinical forms of myositis that you care for from the following: Please select all clinical forms of myositis that you care for from the following: Dermatomyositis Juvenile Dermatomyositis Polymyositis Inclusion body myositis Anti-Synthetase Syndrome Immune-Mediated Necrotizing Myopathy Other, please specify: Clinical Trials Readiness Are you interested in enrolling patients and participating in myositis clinical trials? Are you interested in enrolling patients and participating in myositis clinical trials? Yes No What are the number and types of myositis patients you take care of? What are the number and types of myositis patients you take care of? Please select a value for each type Dermatomyositis Select one 0 Less than 10 10-20 Greater than 20 Juvenile Dermatomyositis Select one 0 Less than 10 10-20 Greater than 20 Polymyositis Select one 0 Less than 10 10-20 Greater than 20 Inclusion Body Myositis Select one 0 Less than 10 10-20 Greater than 20 Anti-Synthetase Syndrome Select one 0 Less than 10 10-20 Greater than 20 Immune-Mediated Necrotizing Myopathy Select one 0 Less than 10 10-20 Greater than 20 In the last 10 years, how many myositis clinical trials have you/has your center participated in? In the last 10 years, how many myositis clinical trials have you/has your center participated in? Please select one None 1-3 4-6 7-10 >10 Which Trials? Please provide detailed information including: Trial Name, Treatment Name, CTC ID#, etc. 2000 characters remaining Is your center able to participate in multi-center placebo-controlled efficacy studies? Is your center able to participate in multi-center placebo-controlled efficacy studies? Yes No Does your center have both a clinical and separate safety assessor? Does your center have both a clinical and separate safety assessor? Yes No Does your center have a research coordinator experienced in myositis? Does your center have a research coordinator experienced in myositis? Yes No Does your center have a dedicated physical therapist to test strength? Does your center have a dedicated physical therapist to test strength? Yes No Is your center able to process research blood specimens? Is your center able to process research blood specimens? Yes No Is your center able to process research muscle biopsies? Is your center able to process research muscle biopsies? Yes No Does your center have access to thigh MRI? Does your center have access to thigh MRI? Yes No Does your center have access to whole body MRI? Does your center have access to whole body MRI? Yes No Scientific Interest Groups Are you interested in joining any of the following Scientific Interest Groups? Are you interested in joining any of the following Scientific Interest Groups? Calcinosis in Juvenile and Adult Dermatomyositis × Calcinosis in Juvenile and Adult Dermatomyositis 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. Data Sharing × Data Sharing 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. Extension of SHARE consensus for management of JDM × Extension of SHARE consensus for management of JDM 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. Inclusion Body Myositis × Inclusion Body Myositis 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. International Classification of Diseases (ICD) × International Classification of Diseases (ICD) 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. Myositis Autoantibodies × Myositis Autoantibodies 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. Myositis Genetics (MYOGEN) × Myositis Genetics (MYOGEN) 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. Outcome Assessment × Outcome Assessment 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. Rehabilitation and Exercise Group × Rehabilitation and Exercise Group 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 in Myositis × Telemedicine in 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. Curriculum Vitae or NIH BioSketch Please have your CV or NIH BioSketch updated before you begin the membership application. Your CV or NIH BioSketch is required for membership approval as a FULL or ASSOCIATE member of IMACS. 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