| Title: |
Collaborative research in myositis-related disorders: MIHRA, a global shared community model |
| Authors: |
Saketkoo, LA; Paik, JJ; Alexanderson, H; Dimachkie, MM; Ernste, FC; Naddaf, E; Shafranski, B; Gupta, L; Mecoli, CA; Saygin, D; Albayda, J; Basharat, P; Day, JA; Valenzuela, A; Bromley, R; de Groot, I; Edison, SE; Lanis, A; Lood, C; Regardt, M; Yi, BY; Benitez, AC; Chinoy, H; Christopher-Stine, L; Isenberg, DA; Lang, B; Oddis, CV; van Royen, A; Vencovsky, J; Werth, VP; Machado, PM |
| Source: |
Clinical and Experimental Rheumatology , 42 , Article CER17535. (2024) (In press). |
| Publisher Information: |
Clinical and Experimental Rheumatology Sas |
| Publication Year: |
2024 |
| Collection: |
University College London: UCL Discovery |
| Subject Terms: |
myositis; inflammatory; myopathies; non-profit; community; rare disease |
| Description: |
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. |
| Document Type: |
article in journal/newspaper |
| File Description: |
application/pdf |
| Language: |
English |
| Relation: |
https://discovery.ucl.ac.uk/id/eprint/10188794/1/Collaborative%20research%20in%20myositis.pdf; https://discovery.ucl.ac.uk/id/eprint/10188794/ |
| Availability: |
https://discovery.ucl.ac.uk/id/eprint/10188794/1/Collaborative%20research%20in%20myositis.pdf; https://discovery.ucl.ac.uk/id/eprint/10188794/ |
| Rights: |
open |
| Accession Number: |
edsbas.B3A56EF5 |
| Database: |
BASE |