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Healthy Volunteer (adult With Typically Developing Child) / Undiagnosed Disease / Inherited Neurodegenerative Disorders · Observational Study
ClinicalTrials.gov · August 7, 2026
Early or partial results. Treat as a signal, not a conclusion.
This is a completed observational multi-substudy registry record examining caregiving processes, emotional responses, and social networks in families affected by inherited diseases. No results are reported in this registry entry, so the evidence base cannot yet be evaluated for clinical impact.
Observational. Undiagnosed Disease, Healthy Volunteer (Adult With Typically Developing Child), Inherited Neurodegenerative Disorders, Inherited Metabolic Disorders (Inborn Er…; age from 18 Years; accepts healthy volunteers. Intervention: Alzheimers related dementias (family); Inherited inflammatory condition (family); Inherited metabolic conditions (family); Inherited neurodegenerative disorders (family); Typically developing (family) = Healthy Volunteers; Undiagnosed cond…. n = 682. 2 sites: United States.
This is a completed observational multi-substudy registry record examining caregiving processes, emotional responses, and social networks in families affected by inherited diseases. No results are reported in this registry entry, so the evidence base cannot yet be evaluated for clinical impact.
Safety was not reported in the material analysed. Check the source before drawing any conclusion about harm.
No clinical impact can be assessed because results are not reported in this registry record. Once results are published, findings on caregiving burden and support network characteristics may inform interventions to improve adaptation and coping in families affected by inherited conditions.
This is a completed observational registry study with 682 enrolled participants examining caregiving processes and social networks in inherited diseases; no results are reported in this registry record, making it a descriptive and exploratory design that cannot yet support clinical or practice conclusions.
As stated by the source record.
Quoted from the source exactly as published.
No clinical impact can be assessed because results are not reported in this registry record. Once results are published, findings on caregiving burden and support network characteristics may inform interventions to improve adaptation and coping in families affected by inherited conditions.
Graded across the dimensions that decide whether you should act, each from what the source actually supports. There is no single score, and where a dimension was not assessed it says so.
What is missing. This record has no key findings. That is a gap in the analysis, not a judgement about the study.
Registry record from ClinicalTrials.gov (NCT01498263). This is a study registration, not published results. Lead sponsor: National Human Genome Research Institute (NHGRI). Recruitment status: COMPLETED. Study type: OBSERVATIONAL. Enrollment: 682 participants (ACTUAL). Conditions: Undiagnosed Disease, Healthy Volunteer (Adult With Typically Developing Child), Inherited Neurodegenerative Disorders, Inherited Metabolic Disorders (Inborn Errors of Metabolism), Alzheimer's Disease and Related Dementias. Primary outcome measures: Measures of caregiving processes , Interim, completion; Family network characteristics , Interim, completion. 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 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 groups, and the NIH Clinical Center. We will recruit formal caregivers, multiple biological and non-biological adult relatives of affected individuals and typically developing controls to construct and evaluate caregiving/support network systems. This project will use a social network framework to develop and adapt common measures of caregiving roles to evaluate burden, perceptual bias, and unmet expectations in caregiving. The psychometric properties of these new measures, characteristics of family caregiving and support networks, and how these network characteristics are associated with caregiving strain and well-being, including biomarkers of physical health, will be investigated. The moderating role of family members cognitions and emotions and disease context will be considered. Findings will guide future research to develop network-based interventions promoting positive adaptation to the presence of inherited conditions in families through improved social environments and coping skills.
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