Patient-rooted insights to shape myositis science
Official title: MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS) - A Qualitative Study of Patient-voiced Research Priorities Across Rare Myositis Diseases
Run by Myositis International Health & Research Collaborative Alliance Foundation · NCT07374107 · Data updated 2026-11-12
This global project asks people living with myositis (and their care partners) to share experiences and rank research questions so the community can see which issues matter most.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 7 Years and up |
| Sex | All |
| Enrollment | 700 (estimated) |
| Sponsor | Myositis International Health & Research Collaborative Alliance Foundation Academic / other |
| Locations | 1 site (New Orleans, Louisiana) |
| Status | Recruiting |
| Started | June 25, 2025 |
| Main results expected | December 2030 |
| Study ends | December 2030 |
| Registry record updated | January 28, 2026 |
| Trial ID | NCT07374107 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal participants are people with a clinician diagnosis of an idiopathic inflammatory myopathy (including IBM and dermatomyositis) or their care partners/parents who can provide informed consent and communicate in the study platforms.
✕Probably not a fit
Children under age seven, people without an inflammatory myopathy diagnosis, and those seeking direct clinical treatment will not benefit directly from this observational priority-setting activity.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
MIHRA-PRISMS is a patient-initiated, observational, mixed-methods project that gathers perspectives from people with inflammatory myopathies worldwide using mostly online tools. Methods include open-ended written narratives, interactive focus groups and community forums, and structured rating and ranking exercises to determine priority topics. Participants are purposively sampled to ensure representation across myositis subtypes and key demographic and clinical characteristics. The main outputs are a structured set of patient-voiced research priorities and a draft framework to guide downstream consensus and funding decisions.
Why it matters
Potential benefit: If successful, the project will produce a clear, patient-voiced list of research priorities to help researchers and funders focus on the questions that matter most to people with myositis.
How similar studies have gone: Priority-setting and qualitative engagement exercises in other rare diseases and some rheumatologic conditions have successfully produced actionable research agendas, although global, patient-led priority work specifically in myositis is relatively novel.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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/ Exclusion Criteria: * Under the age of 7 years old * Do not have a diagnosis of an inflammatory myopathy
Where it's running
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MIHRA Foundation - This is a GLOBAL STUDY
New Orleans, Louisiana, United States Recruiting
Study contacts
- Study coordinator: Lesley Ann Saketkoo, MD/MPH
- Email: info@MiHRAfoundation.org
- Phone: 504 822 6653
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.