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

Lesley Ann Saketkoo, Julie J. Paik, Helene Alexanderson, Mazen M. Dimachkie, Floranne C. Ernste, Elie Naddaf, Barbara Shafranski, Latika Gupta, Christopher A. Mecoli, Didem Saygin, Jemima Albayda, Pari Basharat, Jessica A. Day, Antonia Valenzuela, Rachel Bromley, Ingrid de Groot, Suzanne E. Edison, Aviya Lanis, Christian Lood, Malin RegardtBelina Y. Yi, Alejandro C. Benitez, Hector Chinoy, Lisa Christopher-Stine, David A. Isenberg, Bianca Lang, Chester V. Oddis, Annet van Royen, Jiri Vencovsky, Victoria P. Werth, Pedro M. Machado

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish (US)
Pages (from-to)207-212
Number of pages6
JournalClinical and experimental rheumatology
Volume42
Issue number2
DOIs
StatePublished - Feb 1 2024

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Immunology

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