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Understanding Caregiver Health and Well-being

This observational study wants to understand how being a caregiver affects your health and well-being over time. Researchers are looking at the experiences of adults aged 18 and older who care for someone with a chronic medical condition, such as inherited metabolic disorders, undiagnosed diseases, Batten's disease, Tay Sachs, or diabetes. The study will follow caregivers annually or quarterly to see how social, psychological, behavioral, and biological factors change while they are providing care and after the person they care for has passed away. This study is not testing a new treatment, but rather observing the natural course of caregiver stress. The goal is to learn more about the challenges caregivers face.

Study design
This is an observational study planning to include 2800 participants. Participants will be put into different groups.
What's involved
You will be invited to complete surveys and interviews to share your thoughts and feelings about caregiving, the burden of care, and your support networks over one year.
Compensation
Not stated in the trial record.
Follow-up
Your health and well-being will be assessed annually or quarterly.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05007990

Caregiving Networks Across Disease Context and the Life Course

Recruiting
Not specifiedAges 18+Observational
National Human Genome Research Institute (NHGRI)
~2,800 participants
Updated 2026-08-20 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Natural History
Measured over Annually / quarterly

Conditions

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

Explore related trials

Diabetes MellitusGenetic DisorderInherited Metabolic DisordersNeuronal Ceroid Lipofuscinosis Type 3Rare DisorderTay SachsUndiagnosed Diseases

Where it's being run

1 sites across 1 states
Maryland1

Study leadership

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

Who to contact

Laura M Koehly, Ph.D.
[email protected]
(301) 451-3999
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Adults aged 18 years and older
If the Care Recipient is living, they must self-identify as a primary caregiver to the Care Recipient (individual with a chronic medical condition), OR if the Care Recipient is deceased, they must self-identify as having been a primary caregiver to the now-deceased Care Recipient, OR they must otherwise be identified (i.e., referred) by a participant as a part of the caregiving network
Ability to consent to research
Fluency in English will be needed to complete interview as well as to read, comprehend surveys and consent forms, as appropriate validated measures in other languages are not readily available.
Physically capable of participating in applicable assessments

Exclusion

Care Recipients (as defined in this protocol)
Staff of NHGRI

What this trial measures

  • Natural HistoryAnnually / quarterly

    Investigate the natural history of family caregiving to identify the social, psychological, behavioral, and biological mechanisms that determine possible long-term changes in health during the life and after death of a Care Recipient with a chronic medical condition.