Virtual Data Collection Strategies in Research on Alzheimer's Disease and Related Dementias (ADRD)

Remote data collection emerged as a valuable method for engaging vulnerable populations, such as individuals participating in Alzheimer's disease and related dementias (ADRD) research. Despite challenges like technology readiness and privacy concerns, remote methods have the potential to enhance participation among diverse groups by offering flexibility while addressing accessibility barriers such as geographic distance. This study shares experiences with virtual data collection and the strategies employed to enhance ADRD research involving individuals with and at risk of cognitive impairment.

Experiences are drawn from RIDE (Recruitment Innovations for Diversity Enhancement), an online survey study to assess interest in ADRD research participation among presumably unimpaired adults identifying as Black or African American; and PARADE (Patient and Family Member Reactions to Biomarker-Informed ADRD Diagnoses), an observational, longitudinal cohort study of individuals receiving a biomarker-informed diagnosis for cognitive impairment and their care partners. We detail approaches employed across recruitment, data collection, to retention stages.

Virtual data collection was highly feasible in both studies, successfully engaging participants in ADRD research, including those from underrepresented racial and ethnic groups. In RIDE, although project staff occasionally needed to troubleshoot technical challenges (e.g., broken survey links, video issues), the study successfully recruited 500 adults identifying as Black/African American. PARADE showed that synchronous interviews minimized missing data, with care partners providing essential technical and logistical support. Despite occasional difficulties with video conferencing and participant payments, most participants remained fully engaged, highlighting the effectiveness of virtual methods and the need for continuous support to ensure successful participation.

Virtual data collection offers opportunities to promote inclusion in ADRD research, as demonstrated by the successful enrollment of diverse participant samples in both studies. Successful implementation requires careful planning to address challenges such as digital literacy, educational disparities, and technical support.