MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS)
MIHRA - Patient-Rooted Insights for Shaping Myositis Science (PRISMS) - A Qualitative Study of Patient-voiced Research Priorities Across Rare Myositis Diseases
Who can join
Ages 7 and older · All sexes
Full eligibility criteria
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
About the study
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/
What is being tested
- No intervention - qualitative and mixed methods investigations (other)
Sponsor: Myositis International Health & Research Collaborative Alliance Foundation · Participants: 700 · Started: Jun 25, 2025
Contact the study team
- Lesley Ann Saketkoo, MD/MPH · Phone: 504 822 6653
- Barbara Shafranski · Phone: 504 822 6653
Official record on ClinicalTrials.gov — NCT07374107
Locations in the U.S.
| Louisiana | MIHRA Foundation - This is a GLOBAL STUDY, New Orleans |
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.