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

Part of paid clinical trials in New Orleans, Louisiana.

Sponsor
Myositis International Health & Research Collaborative Alliance Foundation
Study ID
NCT07374107
Status
Recruiting
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Conditions

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

Eligibility Criteria

Sex
ALL
Age
7 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • No intervention - qualitative and mixed methods investigations — OTHER
    No Intervention

Study Details

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/

Key Dates

Start date
Jun 25, 2025
Status verified
Jan 2026
Primary completion
Dec 31, 2030
Completion
Dec 31, 2030

Study Design

Enrollment
700 participants (estimated)

Arms

  • Arm: Individuals living with a myositis disease
    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.

Primary Outcome Measure

Patient-voiced research priority topics [ Time Frame: At completion of narrative, focus group forum or survey, up to 90 minute ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
MIHRA Foundation - This is a GLOBAL STUDYNew OrleansLouisiana70130
Lesley Ann Saketkoo, MD, MPH
[email protected]
504-822-6653
Barbara Shafranski
[email protected]
504 822 6653

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MIHRA Foundation - This is a GLOBAL STUDY· New Orleans, LA

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