What do caregivers of rare disease patients really need?
NCT ID NCT03990428
First seen Nov 01, 2025 · Last updated Apr 29, 2026 · Updated 23 times
Summary
This study asks caregivers of people with Erdheim-Chester disease and similar conditions about their supportive care needs. Researchers will survey 250 unpaid caregivers (family or friends) to learn what kind of help they need. No treatments or medications are involved—only questionnaires.
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This is a summary of
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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: •••-•••-••••
Locations
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Memorial Sloan Kettering Cancer Center
RECRUITINGNew York, New York, 10065, United States
Contact Phone: •••-•••-••••
Contact
Contact Phone: •••-•••-••••
Conditions
Explore the condition pages connected to this study.