Saketkoo Lesley Ann, Paik Julie J, Alexanderson Helene, Dimachkie Mazen M, Ernste Floranne C, Naddaf Elie, Shafranski Barbara, Gupta Latika, Mecoli Christopher A, Saygin Didem, Albayda Jemima, Basharat Pari, Day Jessica A, Valenzuela Antonia, Bromley Rachel, de Groot Ingrid, Edison Suzanne E, Lanis Aviya, Lood Christian, Regardt Malin, Yi Belina Y, Benitez Alejandro C, Chinoy Hector, Christopher-Stine Lisa, Isenberg David A, Lang Bianca, Oddis Chester V, van Royen Annet, Vencovsky Jiri, Werth Victoria P, Machado Pedro M
New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, Louisiana State University and Tulane University Schools of Medicine, New Orleans, LA, USA.
Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Clin Exp Rheumatol. 2024 Feb;42(2):207-212. doi: 10.55563/clinexprheumatol/hc1lsf. Epub 2024 Mar 4.
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.
国际肌炎健康与研究合作联盟（MIHRA）是一个新成立的专门性非营利慈善研究组织，致力于加快国际临床试验准备工作、开展全球专业和大众教育、促进职业发展以及在与免疫介导性炎症性肌病（IIM）相关的疾病方面进行罕见病宣传。从全称来看，这个名字表达了该团体的参与范围和意图。其缩写MIHRA在多种语言中都有相应的词源，体现了IIM团体的精神，包含善良、社群、美好与和平等含义。MIHRA将专注于对儿童和成人IIM相关疾病进行研究及提供护理的全球多学科成人和儿童医疗保健专业人员、研究人员、患者顾问及网络联合起来，以最终找到治愈方法。MIHRA通过连接研究网络，为研究者发起的项目、IIM评估与治疗的共识指南以及IIM特定的职业发展方面的合作努力提供资源平台。MIHRA的基础设施、使命、规划和运营旨在应对罕见病群体特有的挑战，并渴望为罕见病研究的变革性模式做出贡献，如全球扩展和包容性、社区资源利用、简化伦理和数据共享政策以促进合作研究。在此总结了MIHRA的运营核心、使命、愿景、规划以及为维持、加速和推动全球肌炎相关疾病合作研究所提供的社区资源。
