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NCT Number: NCT07374107

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/

Recruiting

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Key information

Conditions

IBM Anti-synthetase Syndrome Behavior Connective Tissue Diseases Dermatomyositis Dermatomyositis, Juvenile Disease Attributes Health Behavior IIM Immune-Mediated Necrotizing Myopathy Inclusion Body Myositis Inflammatory Myopathy Juvenile Dermatomyositis Juvenile Myositis Muscular Diseases Musculoskeletal Diseases Myositis Myositis, Inclusion Body Nervous System Diseases Neuromuscular Diseases Pathologic Processes Pathological Conditions, Signs and Symptoms Patient Acceptance of Health Care Patient Participation Polymyositis Rare Diseases Skin Diseases Skin and Connective Tissue Diseases Treatment Adherence and Compliance

Age range

7 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

No intervention - qualitative and mixed methods investigations

Other

No Intervention

Primary outcomes

  1. Patient-voiced research priority topics

    Time frame: At completion of narrative, focus group forum or survey, up to 90 minute

    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.

Study contacts

Contact information is provided by the study sponsor or research team.

Barbara Shafranski

CONTACT

[email protected]

504 822 6653

Lesley Ann Saketkoo, MD/MPH

CONTACT

[email protected]

504 822 6653

Sponsors and collaborators

Lead sponsor

Myositis International Health & Research Collaborative Alliance Foundation

Other

Collaborators

  • CARRA - Childhood Arthritis & Rheumatology Research Alliance
  • CureJM
  • MIHRA Patient Advisory
  • Myositis Australia
  • Myositis UK
  • PReS - Paediatric Rheumatology European Society
  • The Dutch Myositis Association
  • The German Myositis Association
  • The Myositis Association
  • The Swedish Myositis Association

Registry information

Official study title

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

Acronym: MIHRA-PRISMS

Important dates

Study start
2025
Primary completion
2030
Study completion
2030
First posted
Jan 28, 2026
Registry last updated
Jan 28, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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