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

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00023728%3A_____%2F24%3AN0000023" target="_blank" >RIV/00023728:_____/24:N0000023 - isvavai.cz</a>

Result on the web

<a href="https://doi.org/10.55563/clinexprheumatol/hc1lsf" target="_blank" >https://doi.org/10.55563/clinexprheumatol/hc1lsf</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.55563/clinexprheumatol/hc1lsf" target="_blank" >10.55563/clinexprheumatol/hc1lsf</a>

Result language

angličtina

Original language name

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

Original language 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.

Czech name

—

Czech description

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Type

J_imp - Article in a specialist periodical, which is included in the Web of Science database

CEP classification

—

OECD FORD branch

30226 - Rheumatology

Project

—

Continuities

V - Vyzkumna aktivita podporovana z jinych verejnych zdroju

Publication year

2024

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Name of the periodical

Clinical and Experimental Rheumatology

ISSN

0392-856X

e-ISSN

1593-098X

Volume of the periodical

42

Issue of the periodical within the volume

2

Country of publishing house

IT - ITALY

Number of pages

6

Pages from-to

207-212

UT code for WoS article

001343940900001

EID of the result in the Scopus database

2-s2.0-85187957095