Barriers to recruitment for research procedures in studies of Alzheimer’s disease and related disorders

Abstract

AbstractBackgroundFemales and individuals of Latinx ethnicity have increased risk of developing Alzheimer’s Disease (AD) but are underrepresented in neurodegenerative research. It is critical to understand reasons for this underrepresentation so they can be addressed to ensure that findings are generalizable to the entire population. A potential barrier to AD research is willingness to participate in relatively invasive research procedures (e.g., lumbar puncture (LP), amyloid PET imaging). This willingness may vary by demographic/ethnicity factors thereby producing disparities in research participation. The purpose of this study is to investigate whether gender, education, age, and ethnicity are associated with willingness to participate in research procedures commonly used in observational studies and clinical trials of neurodegenerative disease.MethodA questionnaire that assessed demographics and willingness to participate (yes/no/maybe) in various research procedures [i.e., blood draw, magnetic resonance imaging (MRI), LP, amyloid PET imaging, brain autopsy, clinical trials] was administered in English or Spanish to 81 individuals (mean age=73.2+7.8; mean education=13.7+5.2) after they completed cognitive testing as part of community Memory Screening events. There were 32 Latinx and 49 non‐Latinx participants. There were 29 males and 50 females (gender unreported by two). Willingness to participate was reclassified into binary (yes/not yes) measures. Logistic regression models simultaneously controlling for age and education with gender and ethnicity as predictor variables were used.ResultOverall, a majority of participants were amenable to blood draw (84.5%‐yes), MRI (77.8%‐yes), Amyloid PET (56.8%‐yes), brain autopsy (61.7%‐yes), and observational study (68.8%‐yes). A smaller percentage were amenable to LP (34.6%‐yes) and clinical trials (41.8%‐yes). Women were less likely than men to express willingness to agree to amyloid PET imaging (Odds Ratio: 0.18; p‐value < 0.05). Higher education level was associated with higher odds of willingness to participate in a clinical trial (Odds Ratio: 1.28; p‐value < 0.01). Ethnicity and interaction effects between gender and ethnicity had no statistically significant effects on agreement to specific procedures.ConclusionThe findings reveal that gender and education are important in predicting attitudes toward participation in specific types of research procedures. These results could help inform recruitment strategies that maximize participation of underrepresented groups in research.