Actively Recruiting
Caregiving Networks Across Disease Context and the Life Course: A Comparative Longitudinal Study
Led by National Human Genome Research Institute (NHGRI) · Updated on 2026-06-08
2800
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are exploring how the stress of caregiving affects the health and well-being of adults who care for people with chronic medical conditions. This observational study aims to understand the social, psychological, behavioral, and biological factors involved in caregiving over time, including during and after the death of the care recipient. The study includes caregivers of various chronic conditions such as inherited metabolic disorders, undiagnosed diseases, Batten's disease, Tay Sachs, and diabetes. Participants may be grouped as active caregivers or bereaved caregivers who have lost their care recipient. Over one year, and possibly up to five years, participants will complete online surveys about their health, caregiving experiences, and social support networks. They will also take part in two-part phone interviews about their caregiving and social connections. Some may keep a diary every three months to record daily social activities, stress, and feelings. Blood samples may be collected annually for biological analysis. During the study, participants will provide information through surveys, interviews, and diaries, with some giving yearly blood samples. Researchers will assess changes in social, psychological, behavioral, and biological factors related to caregiving. The primary outcome is to track the natural history of caregiver stress over time. Participation involves various tasks and assessments done online or by phone, with follow-ups possible for up to five years to understand long-term effects.
CONDITIONS
Brief Title
Caregiving Networks Across Disease Context and the Life Course
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adults aged 18 years and older
- Must self-identify as a primary caregiver to a person with a chronic medical condition if the care recipient is living, or as a former primary caregiver if the care recipient is deceased, or be identified as part of the caregiving network
- Ability to provide consent for research participation
- Fluency in English to complete interviews, surveys, and consent forms
- Physically able to participate in study assessments
You will not qualify if you...
- Individuals who are care recipients themselves
- Staff members of the National Human Genome Research Institute
- Persons unable to provide consent due to impaired neuro-sensory or decision-making ability
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or remote)
Duration - Up to 10 years
Participants complete surveys and interviews to assess caregiving experiences, burden, and support networks over time. Biological samples may be collected to evaluate stress-related factors.
Annual or quarterly visits depending on participant availability
Trial Site Locations
Total: 1 location
1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Actively Recruiting
Research Team
L
Laura M Koehly, Ph.D.
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
Similar Trials
Frequently Asked Questions
Have more questions? Get in touch with our team for quick support
Not the Right Trial for You?
Explore thousands of other clinical trials that might be a better match.
Sign up to get personalized trial recommendations delivered to your inbox.
Already have an account? Log in here