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Study identifier: NCT05007990 Synced from ClinicalTrials.gov · July 28, 2026
● Recruiting

Caregiving Networks Across Disease Context and the Life Course

Condition: Inherited Metabolic Disorders · Undiagnosed Diseases · Batten's Disease  ·  Sponsor: National Human Genome Research Institute (NHGRI)

PhaseN/A
Planned participants2800
Who can joinAll sexes, 18 Years to 100 Years
Healthy volunteersYes

About this study

Background: In the U.S., about 53 million informal, unpaid caregivers provide care to a person who is ill, is disabled, or has age-related loss of function. These caregivers may be adult children, spouses, parents, or others. The stress of providing long-term care affects caregivers health and well-being. Researchers want to learn more about this stress and its effects. Objective: To learn how the caregiving process affects the health and well-being of caregivers over time. Eligibility: Adults aged 18 years and older who are caregivers for a person with a chronic medical condition and who have already given consent to take part in other study activities. Design: Participants will be put in different groups. They will complete some or all of the following tasks over 1 year. They may repeat these tasks once a year for up to 5 years. Participants will fill out 2 online surveys. One will ask about their health and their caregiving experience. The other will ask them to list people in their social network and their care recipient s social network who give them support. Participants will have a 2-part phone interview. It will be audio recorded. In part 1, they will be asked about the people they listed in the survey. In part 2, they will be asked about their caregiving experience and events in the care recipient s life. Participants may fill out a weeklong diary every 3 months. It will ask about their daily social activities, well-being, and stress levels. It will also as…

This description comes directly from the study's public registry record.

Talk to the study team

Laura M Koehly, Ph.D.  ·  (301) 451-3999  ·  koehlyl@mail.nih.gov

Always discuss trial participation with your own doctor first.

Locations (1)

National Institutes of Health Clinical CenterBethesda, Maryland, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT05007990