Special Article
Collaborative research in myositis-related disorders: MIHRA, a global shared community model
L.A. Saketkoo1, J.J. Paik2, H. Alexanderson3, M.M. Dimachkie4, F.C. Ernste5, E. Naddaf6, B. Shafranski7, L. Gupta8, C.A. Mecoli9, D. Saygin10, J. Albayda11, P. Basharat12, J.A. Day13, A. Valenzuela14, R. Bromley15, I. De Groot16, S.E. Edison17, A. Lanis18, C. Lood19, M. Regardt20, B.Y. Yi21, A.C. Benitez22, H. Chinoy23, L. Christopher-Stine24, D.A. Isenberg25, B. Lang26, C.V. Oddis27, A. Van Royen28, J. Vencovsky29, V.P. Werth30, P.M. Machado31
- 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
- Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
- Karolinska Medical Unit Occupational Therapy and Physical Therapy, Karolinska University Hospital, and Division of Rheumatology, Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden.
- Department of Neurology University of Kansas, Kansas City, KS, USA.
- Mayo Clinic, Rochester, Minnesota, USA.
- Mayo Clinic, Rochester, Minnesota, USA.
- Patient Research Partner, New Jersey, USA.
- 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.
- Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
- Division of Rheumatology, University of Pittsburgh, Pittsburgh, PA, USA.
- Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
- Western University, Ontario, Canada.
- Walter and Eliza Hall Institute of Medical Research, Melbourne, Australia.
- Department of Rheumatology and Clinical Immunology, Pontificia Universidad Católica de Chile, Santiago, Chile.
- The Myositis Association Columbia, MD, USA.
- The Myositis Association, Columbia, MD, USA, and Spierziekten Nederland (Dutch patient association for NeuroMuscular Diseases), Dutch Myositis Network, TMA Medical Advisory Board, The Netherlands.
- CureJM Foundation, Maryland, USA.
- Seattle Children’s Hospital, Seattle, WA, USA.
- Division of Rheumatology, University of Washington, Seattle, WA, USA.
- Karolinska Medical Unit Occupational Therapy and Physical Therapy, Karolinska University Hospital, and Division of Rheumatology, Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden.
- Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
- Rheumatology Department at the National Hospital Alejandro Posadas, University of Buenos Aires, Argentina.
- 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.
- Johns Hopkins Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
- Centre for Rheumatology, Division of Medicine, University College London, UK.
- Department of Paediatrics and Medicine, Dalhousie University and IWK Health, Halifax, NS, Canada.
- Division of Rheumatology, University of Pittsburgh, Pittsburgh, PA, USA.
- Universiteit Utrecht, Utrecht, The Netherlands.
- Institute of Rheumatology, Prague, Czech Republic.
- Department of Dermatology, University of Pennsylvania and Corporal Michael J. Crescenz VAMC, Philadelphia, PA, USA.
- 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.
CER17535
2024 Vol.42, N°2
PI 0207, PF 0212
Special Article
Free to view
(click on article PDF icon to read the article)
PMID: 38436382 [PubMed]
Received: 02/02/2024
Accepted : 05/02/2024
In Press: 04/03/2024
Published: 14/03/2024
Abstract
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.
