Collaborative research in myositis-related disorders: MIHRA, a global shared community model.
Journal
Clinical and experimental rheumatology
ISSN: 0392-856X
Titre abrégé: Clin Exp Rheumatol
Pays: Italy
ID NLM: 8308521
Informations de publication
Date de publication:
Feb 2024
Feb 2024
Historique:
received:
02
02
2024
accepted:
05
02
2024
medline:
18
3
2024
pubmed:
4
3
2024
entrez:
4
3
2024
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 38436382
pii: 20867
doi: 10.55563/clinexprheumatol/hc1lsf
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM