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

Myositis International Health & Research Collaborative Alliance Foundation

Status: Enrolling

Conditions: Dermatomyositis; Myositis; Inclusion Body Myositis; Anti-synthetase Syndrome; Juvenile Myositis; Immune-Mediated Necrotizing Myopathy; Juvenile Dermatomyositis; Inflammatory Myopathy; Polymyositis; IBM; Dermatomyositis, Juvenile; IIM

Treatments: Other: No intervention - qualitative and mixed methods investigations

Study type: Observational

Funder types: Other

Identifiers

NCT07374107

PRISMS (Other Identifier)

MIHRA - 001

Details and patient eligibility

About

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/

Full description

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.

Enrollment: 700 estimated patients

Sex: All

Ages: 7+ years old

Volunteers: No Healthy Volunteers

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

Trial design

700 participants in 1 patient group

Individuals living with a myositis disease

Description:

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.

Treatment:

Other: No intervention - qualitative and mixed methods investigations