Caregiver survey aims to uncover hidden struggles in rare disease
NCT ID NCT03990428
First seen Jun 26, 2026 · Last updated Jun 26, 2026
Summary
This study surveys 250 informal caregivers (family or friends) of people with Erdheim-Chester disease and similar conditions. Participants complete online questionnaires about their supportive care needs, mood, and sense of purpose. The goal is to identify what caregivers need most, so better support can be offered in the future.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
What this could lead to
If successful, this could help design better support programs for caregivers of people with rare histiocytic diseases.
What could go wrong
This is an observational survey study, not a treatment trial. It will not directly improve patient health, and results may not apply to all caregivers.
Disclaimer
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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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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.
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: •••-•••-••••