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

Recruiting now

Conditions studied: IBM, IIM, Myositis, Inflammatory Myopathy, Dermatomyositis, Dermatomyositis, Juvenile, Anti-synthetase Syndrome, Immune-Mediated Necrotizing Myopathy, Polymyositis, Inclusion Body Myositis, Juvenile Myositis, Juvenile Dermatomyositis

In brief

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/

Key facts

Study ID

NCT07374107

Run by

Myositis International Health & Research Collaborative Alliance Foundation

People needed

700

Starts

2025-06-25

Expected to finish

2030-12-01

Last updated by the study team

2026-01-28

Who can join

Age: 7 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Ability to provide informed consent
• Have a clinician diagnosis of an idiopathic inflammatory myopathy or be a care partner or parent of a person living with an idiopathic inflammatory myopathy.
• Participants who may have signed up through the MIHRA Patient Contact Registry https://mihrafoundation.org/mihra-programs/mihra-patient-contact-registry/

You may not qualify if…

• Under the age of 7 years old
• Do not have a diagnosis of an inflammatory myopathy

Where it is running

• MIHRA Foundation - This is a GLOBAL STUDY — New Orleans, Louisiana, United States (enrolling)

Full record on ClinicalTrials.gov

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