Millions of unpaid caregivers: study tracks hidden health toll

NCT ID NCT05007990

Recruiting now Knowledge-focused Sponsor: National Human Genome Research Institute (NHGRI) Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Jul 31, 2026 · Updated 4 times

Summary

This study follows 2,800 unpaid caregivers of people with chronic conditions like diabetes or inherited disorders. Researchers will survey and interview caregivers over up to 5 years to track changes in their health, stress, and social support. The goal is to understand how caregiving affects well-being and identify ways to help.

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 identify ways to better support caregivers and reduce the health risks associated with long-term caregiving.
What could go wrong: This is an observational study, not a treatment trial. It will not directly improve caregiver health, and results may take years to translate into practical support.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

diabetes mellitus inborn errors of metabolism neuronal ceroid lipofuscinosis 3 Neuronal Ceroid-Lipofuscinoses Rare Diseases Tay-Sachs disease Undiagnosed Diseases

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

BATTEN'S DISEASE DIABETES INHERITED METABOLIC DISORDERS TAY SACHS UNDIAGNOSED DISEASES

Contacts and locations

Locations

National Institutes of Health Clinical Center
RECRUITING

Bethesda, Maryland, 20892, United States

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