An observational study in IBM, IIM and Myositis, sponsored by Myositis International Health & Research Collaborative Alliance Foundation. Recruiting at 1 site in United States. Open to participants aged 7 Years and older. Per ClinicalTrials.gov, last updated 2026-01-28.
Sponsored by Myositis International Health & Research Collaborative Alliance Foundation · Observational
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/
This is a patient-initiated observational qualitative (largely online) study engaging people living with myositis diseases (and optionally their care partners) in mixed methods applications to elicit patient-voiced research priorities. Participants will be purposively sampled to ensure representation across myositis subtypes and key demographic/clinical characteristics.
Methods include open-ended narratives, interactive focus groups and forums, rating and ranking to establish degree of importance and priorities.
Results will include a structured set of patient-voiced priority topics/questions and a draft framework for downstream consensus processes and research agenda setting.
215 studies on the registry are indexed under Myositis; 100 are open to participants now.
This study's planned enrollment of 700 is above the median of 300 across 63 observational studies indexed under Myositis.
Browse Myositis studies →This is the only study on the registry with Myositis International Health & Research Collaborative Alliance Foundation as lead sponsor.
Counted across the registry records on this site, refreshed daily.
Adults and children living with an idiopathic inflammatory myopathy recruited through self-referral (prompted by clinic notices/ patient organization newsletters / /advocacy communities / social media / internet searches ) to provide perspectives on research priorities.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Adults and children with a clinician diagnosis of an inflammatory myopathy (and optionally caregivers/partners) will express their priorities and insights regarding regarding research priorities across myositis diseases.
Other: No intervention - qualitative and mixed methods investigations
No Intervention
Patient-voiced research priority topics
Number and distribution of coded priority domains identified from data collection that has been stratified by disease type, through thematic analysis (codebook refined iteratively) with subsequent assigned degree of importance and ranked priority.
Time frame: At completion of narrative, focus group forum or survey, up to 90 minute
Plan to share: Yes — De-identified aggregate themes/coded domains may be shared; raw transcripts/audio will not be shared.
Supporting information: Clinical study report, Analytic code
Time frame: Data will become available immediately and remain available
Access criteria: Through publication and by contacting info@MIHRAfoundation.org
Data sharing details ↗ · mihrafoundation.org
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