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Trials to join now! 1

Patients take the lead: rare disease study asks what research matters most

Knowledge-focused Recruiting now

This study asks people with rare myositis diseases (and their caregivers) what they think researchers should focus on. Through online surveys and forums, the goal is to create a list of patient-driven research priorities. The study aims to enroll 700 participants worldwide.

Matched conditions: IBM

Sponsor: Myositis International Health & Research Collaborative Alliance Foundation • Aim: Knowledge-focused

Last updated Jun 15, 2026 19:04 UTC

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Patients take the lead: rare disease study asks what research matters most