INS NYC 2024 Program

Poster	Poster Session 04 Program Schedule 02/15/2024 12:00 pm - 01:15 pm Room: Majestic Complex (Posters 61-120) Poster Session 04: Neuroimaging \| Neurostimulation/Neuromodulation \| Teleneuropsychology/Technology Final Abstract #89 Recruitment and Retention of Middle-Age and Older Latinos into an Observational Research Study on Digital Markers of Risk for Alzheimer’s Disease and Related Dementias. Martha Perez Lopez, University of California San Diego, San Diego, United States Ricardo Bentancourt, University of California San Diego, San Diego, United States Perla Perez-Ramirez, San Diego State University, San Diego, United States Paulina Mendoza, San Diego State University, San Diego, United States Shay Nakahira, John A. Burns School of Medicine, Honolulu, United States Emma Churchill, University of California San Diego, San Diego, United States Itzel Cuevas-Ramirez, University of California San Diego, San Diego, United States Linda Gallo, San Diego State University, San Diego, United States Gregory Talavera, San Diego State University, San Diego, United States Perla Rosales, n/a, San Diego, United States Raeanne Moore, University of California San Diego, San Diego, United States Maria Marquine, Duke University, Durham, United States Category: Teleneuropsychology/ Technology Keyword 1: technology Keyword 2: minority issues Keyword 3: mild cognitive impairment Objective: Hispanics/Latinos/as/X (henceforth Latinos) in the United States are widely underrepresented in clinical research studies of Alzheimer’s disease and related dementias (ADRDs). Digital markers collected via smartphones and wearable devices are emerging as a novel way of identifying persons at risk for ADRDs. Yet, there is some concern in the research community that the collection of these data might further hinder participation of Latinos in clinical research. We examined recruitment and retention outcomes of middle-age and older Latinos into a research study on ADRD risk that required real world data collection via smartphones and wearable devices. Participants and Methods: Our study team included several bilingual/bicultural members, including one Multiple Principal Investigator, one Co-Investigator, and multiple study staff. Outreach, engagement and recruitment activities occurred in San Diego county (California) over the course of approximately 18 months (March 2022-August 2023). Building on years of experience fostering trust in the local Latino community, recruitment activities included presentations, participation in health events, and flyer distribution, establishing a formal partnership with a promotora de salud, and recruitment from existing Latino research registries. Recruitment materials were co-developed in English and Spanish utilizing plain language. We implemented several strategies to reduce practical barriers to research participation (e.g., testing site in a neighborhood with high Latino representation, conducted home visits when needed, offered study visits during weekends and after regular working hours, provided transportation to/from study visits, meals during visits, and childcare reimbursement, compensated participants for their time, and provided study results). Participants were Latinos aged 50-70. They were asked to complete two in-person study visits (4 and 2 hour long, respectively) approximately 30 days apart. During the laboratory visits participants completed neuropsychological, psychiatric and neuromedical assessments, underwent a blood draw, had apps installed in their personal smartphones, and were provided with a Fitbit. Five digital data streams were collected passively during the 30-days between study visits. Results: Via the various recruitment activities, 300 persons who self-identified as of Latino background provided their contact information. Of these, 61.9% (n=185) were screened. Among those who completed screening, 81.1% (n=150) were eligible to participate in the study, and 68.7% (n=103) who were eligible were enrolled. Among those who enrolled, 95% were retained through the study period, and 95% of these contributed comprehensive and usable sensor-based data (from at least four of the five digital data streams) over the 30-day period. The main reason for missing digital data were technical issues. From the 300 Latinos that expressed initial interest, only 10 were not enrolled because of digital data related issues, including concerns about digital data collection (n=6), difficulty utilizing study apps (n=2), not owning a smartphone (n=1), and limited phone use (n=1). Conclusions: By adopting a culturally informed approach, we achieved an enrollment rate of 3-to-1 and a strong retention rate, which were consistent with projections based on prior studies. Digital data related issues represented a very small proportion of the reasons for non-enrollment. Findings underscore the potential for strong recruitment and retention of Latinos into digital research on ADRD risk when appropriate approaches are implemented.

Poster

02/15/2024
12:00 pm - 01:15 pm
Room: Majestic Complex (Posters 61-120)

Poster Session 04: Neuroimaging | Neurostimulation/Neuromodulation | Teleneuropsychology/Technology

Final Abstract #89

Recruitment and Retention of Middle-Age and Older Latinos into an Observational Research Study on Digital Markers of Risk for Alzheimer’s Disease and Related Dementias.

Martha Perez Lopez, University of California San Diego, San Diego, United States
Ricardo Bentancourt, University of California San Diego, San Diego, United States
Perla Perez-Ramirez, San Diego State University, San Diego, United States
Paulina Mendoza, San Diego State University, San Diego, United States
Shay Nakahira, John A. Burns School of Medicine, Honolulu, United States
Emma Churchill, University of California San Diego, San Diego, United States
Itzel Cuevas-Ramirez, University of California San Diego, San Diego, United States
Linda Gallo, San Diego State University, San Diego, United States
Gregory Talavera, San Diego State University, San Diego, United States
Perla Rosales, n/a, San Diego, United States
Raeanne Moore, University of California San Diego, San Diego, United States
Maria Marquine, Duke University, Durham, United States

Category: Teleneuropsychology/ Technology

Keyword 1: technology
Keyword 2: minority issues
Keyword 3: mild cognitive impairment

Objective:

Hispanics/Latinos/as/X (henceforth Latinos) in the United States are widely underrepresented in clinical research studies of Alzheimer’s disease and related dementias (ADRDs). Digital markers collected via smartphones and wearable devices are emerging as a novel way of identifying persons at risk for ADRDs. Yet, there is some concern in the research community that the collection of these data might further hinder participation of Latinos in clinical research. We examined recruitment and retention outcomes of middle-age and older Latinos into a research study on ADRD risk that required real world data collection via smartphones and wearable devices.

Participants and Methods:

Our study team included several bilingual/bicultural members, including one Multiple Principal Investigator, one Co-Investigator, and multiple study staff. Outreach, engagement and recruitment activities occurred in San Diego county (California) over the course of approximately 18 months (March 2022-August 2023). Building on years of experience fostering trust in the local Latino community, recruitment activities included presentations, participation in health events, and flyer distribution, establishing a formal partnership with a promotora de salud, and recruitment from existing Latino research registries. Recruitment materials were co-developed in English and Spanish utilizing plain language. We implemented several strategies to reduce practical barriers to research participation (e.g., testing site in a neighborhood with high Latino representation, conducted home visits when needed, offered study visits during weekends and after regular working hours, provided transportation to/from study visits, meals during visits, and childcare reimbursement, compensated participants for their time, and provided study results). Participants were Latinos aged 50-70. They were asked to complete two in-person study visits (4 and 2 hour long, respectively) approximately 30 days apart. During the laboratory visits participants completed neuropsychological, psychiatric and neuromedical assessments, underwent a blood draw, had apps installed in their personal smartphones, and were provided with a Fitbit. Five digital data streams were collected passively during the 30-days between study visits.

Results:

Via the various recruitment activities, 300 persons who self-identified as of Latino background provided their contact information. Of these, 61.9% (n=185) were screened. Among those who completed screening, 81.1% (n=150) were eligible to participate in the study, and 68.7% (n=103) who were eligible were enrolled. Among those who enrolled, 95% were retained through the study period, and 95% of these contributed comprehensive and usable sensor-based data (from at least four of the five digital data streams) over the 30-day period. The main reason for missing digital data were technical issues. From the 300 Latinos that expressed initial interest, only 10 were not enrolled because of digital data related issues, including concerns about digital data collection (n=6), difficulty utilizing study apps (n=2), not owning a smartphone (n=1), and limited phone use (n=1).

Conclusions:

By adopting a culturally informed approach, we achieved an enrollment rate of 3-to-1 and a strong retention rate, which were consistent with projections based on prior studies. Digital data related issues represented a very small proportion of the reasons for non-enrollment. Findings underscore the potential for strong recruitment and retention of Latinos into digital research on ADRD risk when appropriate approaches are implemented.