Where are caregivers in the clinical trial? Evaluation of caregiver responsibilities in Alzheimer's disease and related dementias clinical trials

INTRODUCTIONFamily caregivers of persons with Alzheimer's disease and related dementias (ADRD) have significant responsibilities within health care. They may identify relevant clinical trials and support decision-making about their relative's participation. The objectives of this study were to (a) evaluate the responsibilities of caregivers related to their relative's participation in ADRD clinical trials and (b) examine how these responsibilities are communicated on clinicaltrials.gov. METHODSWe reviewed ADRD clinical trials completed between 1990 and 2021 using clinicaltrials.gov. RESULTSLess than half of clinical trial study information pages included caregiver responsibilities. Nine caregiver responsibilities were provided among those with information (e.g., giving consent, caregiver training and education, monitoring patient's response to intervention, communicating with study team). DISCUSSIONADRD clinical trial study information pages should consistently include caregiver responsibilities to help caregivers better prepare for trial responsibilities. This enhanced engagement with caregivers could also facilitate recruitment and retention, including participants from diverse communities. HighlightsAlzheimer's disease and related dementias (ADRD) clinical trial study information does not consistently include caregiver responsibilities.Caregiver responsibilities in clinical trials span communication, monitoring, and transportation.Robust information provision to caregivers could support participant recruitment and retention.Meaningfully engaging caregivers could support recruitment of diverse participants.

Automated summary

This study evaluates the responsibilities of family caregivers in ADRD clinical trials and examines how these responsibilities are communicated on clinicaltrials.gov. The results show that less than half of the trial information pages include caregiver responsibilities, such as giving consent, caregiver training, monitoring patient's response, and communicating with the study team. The study suggests that consistently including caregiver responsibilities can better prepare them and facilitate recruitment and retention of diverse participants.