Patients take the lead: rare disease study puts your voice first
NCT ID NCT07374107
First seen Feb 01, 2026 · Last updated May 01, 2026 · Updated 9 times
Summary
This study asks 700 people with rare myositis diseases (and their caregivers) what research questions matter most to them. Through online surveys and forums, the goal is to create a patient-driven list of priorities to guide scientists and funders. No treatments are tested—this is about listening and learning from those who live with the condition.
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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
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