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

Myositis International Health & Research Collaborative Alliance Foundation700 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

700

Conditions

IBM IIM Myositis Inflammatory Myopathy

Eligibility

Sex: ALLMin age: 7 Years

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

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

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

Overview

Conditions

Interventions

Eligibility

Locations (1)

Outcomes

Primary Outcomes

Central Contacts