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

NCT ID NCT07374107

First seen Feb 01, 2026 · Last updated Jun 12, 2026 · Updated 17 times

Summary

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.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • MIHRA Foundation - This is a GLOBAL STUDY

    RECRUITING

    New Orleans, Louisiana, 70130, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

Conditions

Explore the condition pages connected to this study.