Status:
RECRUITING
Caregiving Networks Across Disease Context and the Life Course
Lead Sponsor:
National Human Genome Research Institute (NHGRI)
Conditions:
Inherited Metabolic Disorders
Undiagnosed Diseases
Eligibility:
All Genders
18-100 years
Brief 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, sp...
Detailed Description
Study Description: Caregivers will be invited to participate in surveys and interviews to assess their cognitions and emotions about caregiving, caregiving burden, and caregiving or support network sy...
Eligibility Criteria
- INCLUSION CRITERIA:
To be eligible to participate in this study, an individual must meet all of the following criteria:
- 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 CRITERIA:
An individual who meets any of the following criteria will be excluded from this study:
- Care Recipients (as defined in this protocol)
- Staff of NHGRI
Staff of NHGRI are unable to participate in this study as a safeguard against the risk of ethical concerns. As per OHSRP SOP 404, NIH staff may be a vulnerable class of study subjects. Excluding staff of the Institute conducting the study assures there will not be any perceived or actual conflict of interest, pressure/coercion to participate among co-workers, subordinates, work unit-members, etc. As further noted in OHSRP SOP 404, exclusion further protects this class of subjects privacy and confidentiality; and protects the study s scientific integrity.
Persons with impaired neuro-sensory or decision-making ability (adults unable to provide consent) will not be enrolled in the study. Persons with impaired neuro-sensory or decision making ability would not be able to participate with independent responses to the various social behavioral measures we use in the study interview and survey. Learning information about these individuals through other people instead of themselves would introduce bias to this study.
Key Trial Info
Start Date :
September 8 2022
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
December 31 2030
Estimated Enrollment :
2800 Patients enrolled
Trial Details
Trial ID
NCT05007990
Start Date
September 8 2022
End Date
December 31 2030
Last Update
March 30 2026
Active Locations (1)
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1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892