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Study reveals hidden stress of caring for loved ones with genetic disorders

NCT ID NCT01498263

First seen Sep 30, 2025 · Last updated May 22, 2026 · Updated 27 times

Summary

This study looked at how family and friends support caregivers of people with inherited diseases like Alzheimer's or metabolic disorders. Researchers surveyed over 680 caregivers and family members to understand their worries, guilt, and social connections. The goal is to use these insights to design better support programs for caregivers.

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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

Locations

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States

  • University of Memphis

    Memphis, Tennessee, 38152, United States

Conditions

Explore the condition pages connected to this study.