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Caregiving Networks Across Disease Context and the Life Course

NCT05007990 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 2800

Last updated 2026-03-30

No results posted yet for this study

Summary

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 ask about their thoughts and feelings about caregiving.

Participants may give a blood sample each year they are in the study.

...

Conditions

  • Inherited Metabolic Disorders
  • Undiagnosed Diseases
  • Batten's Disease
  • Tay Sachs
  • Diabetes

Sponsors & Collaborators

  • National Human Genome Research Institute (NHGRI)

    lead NIH

Principal Investigators

  • Laura M Koehly, Ph.D. · National Human Genome Research Institute (NHGRI)

Eligibility

Min Age
18 Years
Max Age
100 Years
Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
2022-09-08
Primary Completion
2030-12-31
Completion
2030-12-31

Countries

  • United States

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT05007990 on ClinicalTrials.gov