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
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

Pagination

207-212

Auteurs

Lesley Ann Saketkoo (LA)

New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, Louisiana State University and Tulane University Schools of Medicine, New Orleans, LA, USA. lsaketk@tulane.edu.

Julie J Paik (JJ)

Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

Helene Alexanderson (H)

Karolinska Medical Unit Occupational Therapy and Physical Therapy, Karolinska University Hospital, and Division of Rheumatology, Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden.

Mazen M Dimachkie (MM)

Department of Neurology University of Kansas, Kansas City, KS, USA.

Floranne C Ernste (FC)

Mayo Clinic, Rochester, Minnesota, USA.

Elie Naddaf (E)

Mayo Clinic, Rochester, Minnesota, USA.

Barbara Shafranski (B)

Patient Research Partner, New Jersey, USA.

Latika Gupta (L)

Department of Rheumatology, Royal Wolverhampton Hospitals NHS Trust, Wolverhampton, and Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, UK.

Christopher A Mecoli (CA)

Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

Didem Saygin (D)

Division of Rheumatology, University of Pittsburgh, Pittsburgh, PA, USA.

Jemima Albayda (J)

Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

Pari Basharat (P)

Western University, Ontario, Canada.

Jessica A Day (JA)

Walter and Eliza Hall Institute of Medical Research, Melbourne, Australia.

Antonia Valenzuela (A)

Department of Rheumatology and Clinical Immunology, Pontificia Universidad Católica de Chile, Santiago, Chile.

Rachel Bromley (R)

The Myositis Association Columbia, MD, USA.

Ingrid de Groot (I)

The Myositis Association, Columbia, MD, USA, and Spierziekten Nederland (Dutch patient association for NeuroMuscular Diseases), Dutch Myositis Network, TMA Medical Advisory Board, The Netherlands.

Suzanne E Edison (SE)

CureJM Foundation, Maryland, USA.

Aviya Lanis (A)

Seattle Children's Hospital, Seattle, WA, USA.

Christian Lood (C)

Division of Rheumatology, University of Washington, Seattle, WA, USA.

Malin Regardt (M)

Karolinska Medical Unit Occupational Therapy and Physical Therapy, Karolinska University Hospital, and Division of Rheumatology, Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden.

Belina Y Yi (BY)

Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

Alejandro C Benitez (AC)

Rheumatology Department at the National Hospital Alejandro Posadas, University of Buenos Aires, Argentina.

Hector Chinoy (H)

Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, and Department of Rheumatology, Salford Royal Hospital, Northern Care Alliance NHS Foundation Trust, Manchester Academic Health Science Centre, Salford, UK.

Lisa Christopher-Stine (L)

Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

David A Isenberg (DA)

Centre for Rheumatology, Division of Medicine, University College London, UK.

Bianca Lang (B)

Department of Paediatrics and Medicine, Dalhousie University and IWK Health, Halifax, NS, Canada.

Chester V Oddis (CV)

Division of Rheumatology, University of Pittsburgh, Pittsburgh, PA, USA.

Annet van Royen (A)

Universiteit Utrecht, Utrecht, The Netherlands.

Jiri Vencovsky (J)

Institute of Rheumatology, Prague, Czech Republic.

Victoria P Werth (VP)

Department of Dermatology, University of Pennsylvania and Corporal Michael J. Crescenz VAMC, Philadelphia, PA, USA.

Pedro M Machado (PM)

Department of Neuromuscular Diseases and Centre for Rheumatology, University College London; and Department of Rheumatology and Queen Square Centre for Neuromuscular Diseases, University College London Hospitals NHS Foundation Trust, London, UK.

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