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Study explores how family and friends impact caregiver health

NCT ID NCT01498263

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Sep 17, 2026 · Updated 25 times

Summary

This completed study looked at how the social networks of caregivers affect their stress and health when caring for someone with an inherited disease. Researchers surveyed over 680 participants, including family members and formal caregivers, to understand caregiving burden and support systems. The goal is to use these insights to design better interventions that help caregivers cope and stay healthy.

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 research could point toward better ways to support caregivers of people with inherited diseases, improving their well-being and coping skills.
What could go wrong
This is an observational study, not a treatment trial. It cannot directly change disease outcomes, and findings may not apply to all caregiving situations.

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

Study facts

What this study's own registry entry says, in plain language.

Participants

682 people

The number who actually took part.

Started

Jan 2012

Lead sponsor

A government research agency

The lead sponsor is the US National Institutes of Health.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

This is a study has family-based enrollment of caregivers and their social support networks. Specific context of recruitment may vary depending upon the health condition of the affected family member; number of severe, chronic conditions with genetic basis are among the inclusion criteria. For the substudy of caregivers of persons affected by Alzheimer s disease and related dementias (AD), recruitment took place in residential facilities in Memphis, TN \[substudy1; data analysis only\]. Caregivers of persons affected by inborn errors of metabolism, genetic neurodegenerative conditions, or with severe chronic undiagnosed conditions may be referred in to the protocol by NIH collaborators or through advocacy groups. Healthy volunteers (parents of healthy child/ren) are recruited through NIH and in the community. The study uses snowball sampling of self-referral: each participant is invited to refer in support network members who also provide support/care for the focus-relative.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

* INCLUSION CRITERIA: * Adult family members of the individuals affected by an inherited disease (e.g. Alzheimer s disease, inborn errors of metabolism and mitochondrial disease, lysosomal storage disorder, genetic neurodegenerative disorder, undiagnosed diseases, and inherited inflammatory conditions) OR * Informal caregivers of the affected individual OR * Caregivers family members OR * Formal caregivers who are identified as part of patients caregiving networks will be eligible for recruitment in the study OR * For the control group in Substudy 2, adult family members of normally developing children, informal caregivers, caregivers family members and formal caregivers who are identified as part of the child s caregiving network will be eligible for recruitment in the study. (For better matching across groups: in the Healthy Volunteer controls, the normally developing focus child must live in the parent/caregiver household on a full-time basis.) * Participants are eligible for biospecimen collection in Substudies 3 only if two parents/caregivers are present in the household, eligible, and willing to provide biospecimens. * Fluency in English EXCLUSION CRITERIA: * Those who are unable to complete the survey and interviews * Affected individuals/Patients with condition being studied * Individuals under the age of 18 * Those who have fever or signs of acute infection on the collection day, have been hospitalized in the past 3 months, and women who are currently pregnant or nursing will not be eligible for the biospecimen collection portion of Substudies 2 and 3 but will be eligible for the survey/interview portion of the substudies. * Control group individuals will be excluded if they serve as a caregiver for anyone in their family affected by any major medical condition. * Staff of NHGRI (National Human Genome Research Institute)

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

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

Contacts and locations

Locations

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States

  • University of Memphis

    Memphis, Tennessee, 38152, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.