This study, called PRISMS, wants to understand what research topics are most important to people living with myositis diseases like IBM, IIM, Myositis, Inflammatory Myopathy, and Dermatomyositis. Since these are rare diseases, this study aims to gather your perspectives, or those of your care partner, through online open-ended questions, community forums, and surveys. There are no interventions or drugs being tested. The goal is to create a list of research priorities directly from patients to help guide future research and funding decisions. The study is currently unclear on its recruitment status and plans to include about 700 participants.

Study design

This is an observational study that will gather information from about 700 participants. It uses qualitative and mixed methods, mostly online, to understand patient perspectives.

What's involved

You would participate in methods like open-ended narratives, interactive focus groups, forums, and rating/ranking activities. Each activity could last up to 90 minutes.

Compensation

Not stated in the trial record.

Follow-up

Your input will be measured at the completion of your narrative, focus group forum, or survey, up to 90 minutes.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.