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NCT01498263 · ClinicalTrials.gov registry record
Inherited Diseases, Caregiving, and Social Networks
A clinical trial, sponsored by National Human Genome Research Institute (NHGRI).
- Completed
- Registry status
- 682
- Enrollment target
NCT01498263: Completed study, sponsored by National Human Genome Research Institute (NHGRI).
NCT01498263 is a clinical trial that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 682 participants. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT01498263 has completed, sponsored by National Human Genome Research Institute (NHGRI).
- COMPLETED
- Registry status
- 682 participants
- Enrollment target
Study 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 salient in the context of inherited conditions. Previous studies have not examined caregiving from a network perspective, nor have they considered how cognitive and emotional responses, such as caregivers worry for themselves and relatives acquiring the disease or guilt related to the genetic etiology of their child s illness, as possible stressors; the current project fills this literature gap. Caregiving processes may vary across type of illness and the life course. In illnesses that impact children, parents and grandparents may take on caregiving roles whereas in conditions that impact adults, spouses and adult children may provide care. Caregivers must adapt to the strain of caring for their affected relatives and this adaptation may differ depending on caregiver roles. The caregiver s support network may influence adaptation, impacting the health and well-being of patients, their caregivers, and other relatives. This project, comprised of 5 substudies, will examine social contexts surrounding families involved in caring for individuals with chronic inherited conditions from a relational perspective. Surveys and interviews will assess participants cognitions and emotions about the disease, caregiving burden and caregiving/support network systems. In addition, biomarkers will be considered in 2 substudies to examine how caregiving roles and expectations impact health among caregivers. As part of our current inquiry, we have developed an assessment tool aimed at understanding caregiver experiences related to dietary practices in the context of metabolic conditions. To evaluate the psychometric properties of this scale, we propose a fifth substudy under the current protocol. We aim to recruit at least 5550 participants through residential/daycare centers, advocacy grou
Primary Outcome
Develop measures of caregiving processes within family social network systems
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 682 participants |
| Start Date | 2012-01-09 |
What the finished NCT01498263 record still lists
NCT01498263 is an observational study that tracks outcomes without assigning an intervention. The registered 682 participants enrollment target is mid-sized for trials with a published cap.
The record links to 0 conditions, and to 0 interventions.
NCT01498263 does not publish any study locations in the registry export this page uses.
Frequently Asked Questions
What is clinical trial NCT01498263 about?
NCT01498263 is a clinical study titled "Inherited Diseases, Caregiving, and Social Networks". 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 salient in the context of inherited conditions. Previous studies have not examined caregiving from a net...
What is the current status of trial NCT01498263?
This trial is currently completed. The enrollment target is 682 participants. The study started on 2012-01-09.
Who is sponsoring clinical trial NCT01498263?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.
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