Trial Now Recruiting: Caregiving Networks Across Disease Context and the Life Course (NCT05007990)
WHY IT MATTERS
If you or a family member care for someone with a rare inherited metabolic disorder, Batten disease, Tay-Sachs, or an undiagnosed disease, this study directly addresses the health challenges caregivers face and could lead to better support resources.
This study is looking for 2,800 people to help researchers understand how being a caregiver affects a person's health and stress levels over time. The study includes caregivers of people with rare diseases like Batten disease, Tay-Sachs disease, and other inherited metabolic disorders, as well as caregivers of people with undiagnosed diseases. By learning more about caregiver stress, researchers hope to find ways to better support the millions of unpaid family caregivers in the U.S.
NCT ID: NCT05007990 Status: RECRUITING Conditions: Inherited Metabolic Disorders, Undiagnosed Diseases, Batten's Disease, Tay Sachs, Diabetes Enrollment: 2800 Sponsor: National Human Genome Research Institute (NHGRI) 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, spouses, parents, or others. The stress of providing long-term care affects caregivers health and well-being. Researchers want to learn more about this stress and its effects. Objective: To learn how the caregiving process affects the health and well-being of caregivers over time. Eligibility: Adu
YOU CAN ACT ON THIS
If you are an adult caregiver for someone with one of these conditions, visit clinicaltrials.gov (NCT05007990) to check eligibility and find a recruiting site near you.