Patient Insights Study to Identify Research Priorities for Myositis Diseases Including Adults and Children Diagnosed with Inflammatory Myopathies

What this Trial Is About

Researchers are conducting a global observational study to understand the research priorities of people living with rare myositis diseases. These conditions present physical and psychosocial challenges that current research may not fully address. The study gathers patient perspectives to identify the most important research questions from their viewpoint, aiming to guide future research and funding decisions. This largely online study uses qualitative and mixed methods such as open-ended questions, interactive focus groups, community forums, and surveys to collect insights from adults and children diagnosed with inflammatory myopathies, as well as optionally their caregivers or partners. Participants share their priorities and experiences related to myositis diseases to help shape the research agenda. Participants engage by providing narratives, participating in forums, and completing surveys that last up to 90 minutes. Researchers analyze these contributions to create a structured set of patient-voiced research priorities. The study monitors these priorities as the primary outcome measure and aims to develop a framework to guide future consensus and research planning. Participation involves mostly online activities, making it accessible and convenient for those involved.

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