MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS)

Myositis diseases are each rare diseases. As in other rare diseases, people living with myositis diseases face physical and psychosocial challenges that may not be recognized in current research priorities. The PRISMS study is a global investigation that collects patient perspectives through (mostly online) methods of open-ended questions, community forums and survey to identify the most pressing research concerns as identified by patients. Findings will be analyzed to create a patient-voiced set of research priorities that can guide the direction of research and help inform funding decisions across myositis diseases. Potential participants can express interest via https://mihrafoundation.org/mihra-programs/mihra-patient-contact-registry/

NCT Number	NCT07374107
Lead Sponsor	Myositis International Health & Research Collaborative Alliance Foundation Collaborators: MIHRA Patient Advisory, Myositis Australia, CureJM, The Myositis Association, The Dutch Myositis Association, The Swedish Myositis Association, Myositis UK, The German Myositis Association, CARRA - Childhood Arthritis & Rheumatology Research Alliance, PReS - Paediatric Rheumatology European Society
Conditions	IBM, IIM, Myositis, Inflammatory Myopathy, Dermatomyositis, Dermatomyositis, Juvenile, Anti-synthetase Syndrome, Immune-Mediated Necrotizing Myopathy +4 more
Enrollment	700 participants
Start Date	2025-06-25
Primary Completion	2030-12 (estimated)
Study Completion	2030-12 (estimated)
Updated on ClinicalTrials.gov	2026-01-28