Collaborative research in myositis-related disorders: MIHRA, a global shared community model

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dc.contributor.authorSaketkoo, L. A.
dc.contributor.authorPaik, J. J.
dc.contributor.authorAlexanderson, H.
dc.contributor.authorDimachkie, M. M.
dc.contributor.authorErnste, F. C.
dc.contributor.authorNaddaf, E.
dc.contributor.authorShafranski, B.
dc.contributor.authorGupta, L.
dc.contributor.authorMecoli, C. A.
dc.contributor.authorSaygin, D.
dc.contributor.authorAlbayda, J.
dc.contributor.authorBasharat, P.
dc.contributor.authorDay, J. A.
dc.contributor.authorValenzuela, A.
dc.contributor.authorBromley, R.
dc.contributor.authorde Groot, I.
dc.contributor.authorEdison, S. E.
dc.contributor.authorLanis, A.
dc.contributor.authorLood, C.
dc.contributor.authorRegardt, M.
dc.contributor.authorYi, B. Y.
dc.contributor.authorBenitez, A. C.
dc.contributor.authorChinoy, H.
dc.contributor.authorChristopher-Stine, L.
dc.contributor.authorIsenberg, D. A.
dc.contributor.authorLang, B.
dc.contributor.authorOddis, C. V.
dc.contributor.authorvan Royen, A.
dc.contributor.authorVencovsky, J.
dc.contributor.authorWerth, V. P.
dc.contributor.authorMachado, P. M.
dc.date.accessioned2025-01-20T16:04:39Z
dc.date.available2025-01-20T16:04:39Z
dc.date.issued2024
dc.description.abstractMyositis International Health and Research Collaborative Alliance (MIHRA) is a newly formed purpose-built nonprofit charitable research organisation 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 paediatric healthcare professionals, researchers, patient advisors and networks focused on conducting research in and providing care for paediatric 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, utilisation 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.
dc.fuente.origenWOS
dc.identifier.eissn1593-098X
dc.identifier.issn0392-856X
dc.identifier.urihttps://repositorio.uc.cl/handle/11534/89833
dc.identifier.wosidWOS:001343940900001
dc.issue.numero2
dc.language.isoen
dc.pagina.final212
dc.pagina.inicio207
dc.revistaClinical and experimental rheumatology
dc.rightsacceso restringido
dc.subjectmyositis
dc.subjectinflammatory myopathies
dc.subjectnon-profit
dc.subjectcommunity
dc.subjectrare disease
dc.titleCollaborative research in myositis-related disorders: MIHRA, a global shared community model
dc.typeartículo
dc.volumen42
sipa.indexWOS
sipa.trazabilidadWOS;2025-01-12
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