ClinicalTrials.gov record NCT07374107

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

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Aug 22, 2026

MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS) - A Qualitative Study of Patient-voiced Research Priorities Across Rare Myositis Diseases

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.
Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.
Age7 years old and older
SexAll
LocationUnited States
AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

A largely online, patient-initiated qualitative study asking people living with myositis (and optionally care partners) about their research concerns. It uses open-ended narratives, group forums, and surveys to gather and rank topics patients consider important. Results will produce a structured set of patient-voiced research priorities and a draft framework for future consensus work.

What it is studying. The study is collecting and analyzing what people with myositis (and their care partners) say are the most important research questions and concerns, and how those priorities differ across myositis types and groups.

What the researchers hope to learn. To identify a structured set of patient-voiced research priority topics and questions, show how priority areas vary by myositis subtype, assign degrees of importance and ranked priorities, and produce a draft framework to inform downstream consensus processes and research agenda setting.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

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/

Interventions being studied

Being studied in this trial does not mean the treatment or procedure is approved or available for this condition.

Other
  • No intervention - qualitative and mixed methods investigations

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

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

Study description and what participation involves

The study's detailed description, as published on ClinicalTrials.gov.

Detailed description from the 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.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

Most participation is online and qualitative. You may write or speak open-ended personal narratives, join interactive focus groups or community forums, and complete surveys that ask you to rate and rank research topics. Individual activities (a narrative, focus group forum, or survey) can take up to about 90 minutes. The study will purposively sample participants to ensure representation across myositis subtypes and key characteristics; there is no medical intervention.

How the study is structured. An observational, cross-sectional qualitative study done largely online. Participants provide open-ended written accounts, join interactive focus groups or community forums, and complete ranking/rating tasks. Responses are analyzed thematically and ranked to produce prioritized topics; participants do not receive any medical treatment as part of the study.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

  • This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
  • The listed sites are in United States. Is any of them reachable for me, and does the study help with travel?
  • Which of the eligibility criteria would need to be checked with tests before I could join?

More on anti-synthetase syndrome

This trial is also listed on this site under dermatomyositis and polymyositis.

Clinical trials11 trials listed for anti-synthetase syndromeEvery trial the registry lists for anti-synthetase syndrome, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in anti-synthetase syndrome researchLatest monthly update: September 2026. Includes: Lung medicine pattern. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start
Jun 25, 2025
Primary completion
December 2030 (estimated)
Study completion
December 2030 (estimated)
Target enrollment
700 participants (estimated)
Last updated on registry
Jan 28, 2026
Data verified
Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

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

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Participating sites (1)

Terms used on this page · explanations by MedicalUpdates.ai

registry
An organised collection of information about people with a particular condition, gathered over time for research. Joining a registry usually means sharing medical information, not receiving a treatment.
informed consent
The process of explaining a study, including its risks and what participation involves, so that a person can decide freely whether to take part. Consent is usually documented in writing, and a participant can choose to leave the study later.
Inclusion Criteria
The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion Criteria
The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

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