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
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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.
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
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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MIHRA Foundation - This is a GLOBAL STUDY
RECRUITINGNew Orleans, Louisiana, 70130, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.