Jennifer Dinh
Research Mentor(s): Annalise Rahman-Filipiak
Mentor Department: Psychiatry
Authors: Jennifer Dinh, Theresa Gierzynski, Allyson Gregoire, Annalise Rahman-Filipiak
Session: Session 5 (2:00pm – 2:50pm)
Presentation Type: Poster 98
Abstract
Introduction: The prevalence of Alzheimer’s disease and related dementias (ADRD) has
increased dramatically, affecting nearly 7 million Americans today. Research exploring causes of
and treatments for ADRD can be supported through formation and leveraging of research
registries. Registries allow investigators to link participants with different characteristics and at
different cognitive levels to studies for which they are eligible. This study aims to understand
whether factors such as participants’ education level and common medical co-morbidities (e.g.,
head injury, diabetes, depression) impact involvement in research registries and enrollment in
ADRD studies.
Methods: We conducted a survey of 25 questions regarding background characteristics, research
motivations and barriers, and perceptions of research to participants in the research registry for
the Michigan Alzheimer’s Disease Research Center (MADRC), the Michigan Neurological Data
Set (MiNDSet) Registry. The survey included multiple-choice, check all that apply, and
open-ended questions and was administered via telephone or as a link sent via email through the
Research Electronic Data Capture (REDCap). Five-hundred-and-sixty-five participants (age = 72
± 8), years of education = 16.61± 2.25, responded, 15% of whom self-identified as Black/African
American and 68% of whom self-identified as female). Predictors included self-reported years of
completed education, history of medication use for memory loss, mental health conditions,
cardiovascular conditions, as well as history of head injury, stroke, seizures, and cancer. To
measure enrollment, we asked survey participants to indicate whether they had enrolled in a
MADRC-affiliated study of ADRD in the past year. The associations between the predictor
variables of interest and odds of enrollment in an ADRD study were assessed using logistic
regression models.
Results: There appeared to be no association between education levels and the likelihood of
participating in a research study (OR = 1.08, 95% CI: 1.00, 1.18). The odds of participating in a
research study decreased by 41% (95% CI: 0.37, 0.94) among those individuals who reported a
history of head injury than those who did not. Among those who reported taking medication for
high cholesterol, the odds of participating in a study increased by 41% (OR = 1.41, 95% CI:
0.95, 2.11) compared to those who did not report taking medication for high cholesterol. In those
who took blood thinners, their odds of participating increased by 210% (OR = 3.10, 95%
CI:1.15, 10.8) compared to those who did not.
Conclusion: Although the results displayed a non-significant association between the explored
variables, more research is encouraged. A significant limitation of this investigation was its
reliance on our respondents’ recollection of past study participation; this approach may be
suspectable to inaccuracies, especially in participants with memory deficits. Furthermore, future
investigations should consider other factors that may predict who does and does not engage in
ADRD research. This is particularly important as ADRD research – which has historically
included mostly well-educated, wealthy, and non-minority participants– must be representative
in order to produce treatments or cures that can be generalizable to the larger population.
