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Collaborative research in myositis-related disorders: MIHRA, a global shared community model
LA. Saketkoo, JJ. Paik, H. Alexanderson, MM. Dimachkie, FC. Ernste, E. Naddaf, B. Shafranski, L. Gupta, CA. Mecoli, D. Saygin, J. Albayda, P. Basharat, JA. Day, A. Valenzuela, R. Bromley, I. de Groot, SE. Edison, A. Lanis, C. Lood, M. Regardt,...
Language English Country Italy
Document type Journal Article
- MeSH
- Global Health * MeSH
- Child MeSH
- Adult MeSH
- Humans MeSH
- Myositis * diagnosis therapy MeSH
- Social Cohesion MeSH
- Rare Diseases diagnosis therapy MeSH
- Check Tag
- Child MeSH
- Adult MeSH
- Humans MeSH
- Publication type
- Journal Article MeSH
Myositis International Health and Research Collaborative Alliance (MIHRA) is a newly formed purpose-built non-profit charitable research organization dedicated to accelerating international clinical trial readiness, global professional and lay education, career development and rare disease advocacy in IIM-related disorders. In its long form, the name expresses the community's scope of engagement and intent. In its abbreviation, MIHRA, conveys linguistic roots across many languages, that reflects the IIM community's spirit with meanings such as kindness, community, goodness, and peace. MIHRA unites the global multi-disciplinary community of adult and pediatric healthcare professionals, researchers, patient advisors and networks focused on conducting research in and providing care for pediatric and adult IIM-related disorders to ultimately find a cure. MIHRA serves as a resourced platform for collaborative efforts in investigator-initiated projects, consensus guidelines for IIM assessment and treatment, and IIM-specific career development through connecting research networks.MIHRA's infrastructure, mission, programming and operations are designed to address challenges unique to rare disease communities and aspires to contribute toward transformative models of rare disease research such as global expansion and inclusivity, utilization of community resources, streamlining ethics and data-sharing policies to facilitate collaborative research. Herein, summarises MIHRA operational cores, missions, vision, programming and provision of community resources to sustain, accelerate and grow global collaborative research in myositis-related disorders.
Centre for Rheumatology Division of Medicine University College London UK
CureJM Foundation Maryland USA
Department of Neurology University of Kansas Kansas City KS USA
Department of Neuromuscular Diseases and Centre for Rheumatology University College London
Department of Paediatrics and Medicine Dalhousie University and IWK Health Halifax NS Canada
Division of Rheumatology University of Pittsburgh Pittsburgh PA USA
Division of Rheumatology University of Washington Seattle WA USA
Institute of Rheumatology Prague Czech Republic
Johns Hopkins Division of Rheumatology Johns Hopkins University School of Medicine Baltimore MD USA
Mayo Clinic Rochester Minnesota USA
Patient Research Partner New Jersey USA
Seattle Children's Hospital Seattle WA USA
The Myositis Association Columbia MD USA
Universiteit Utrecht Utrecht The Netherlands
Walter and Eliza Hall Institute of Medical Research Melbourne Australia
References provided by Crossref.org
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