Status:
COMPLETED
Inherited Diseases, Caregiving, and Social Networks
Lead Sponsor:
National Human Genome Research Institute (NHGRI)
Conditions:
Undiagnosed Disease
Healthy Volunteer (Adult With Typically Developing Child)
Eligibility:
All Genders
18+ years
Brief Summary
Approximately 66 million informal caregivers care for someone who is ill, disabled, or aged. These caregivers experience significant distress associated with caregiving, which may be particularly sali...
Detailed Description
Approximately 66 million informal caregivers care for someone who is ill, disabled, or aged. These caregivers experience significant distress associated with caregiving, which may be particularly sali...
Eligibility Criteria
Inclusion
- 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)
Exclusion
Key Trial Info
Start Date :
January 9 2012
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
Estimated Enrollment :
682 Patients enrolled
Trial Details
Trial ID
NCT01498263
Start Date
January 9 2012
Last Update
December 2 2025
Active Locations (2)
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1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
2
University of Memphis
Memphis, Tennessee, United States, 38152