National Alzheimer’s Coordinating Center (NACC) - Bardach

Genetic discoveries have played, and continue to play, a critical role in our understanding of underlying pathological processes contributing to the development of degenerative dementias. With scientific advances in the ability to detect preclinical Alzheimer’s disease at earlier stages (influenced by genetic risk), and with clinical trials targeting individuals before symptoms of the disease develop (selected on the basis of genetic information), it is critical that individuals engage in genetic research to help advance the science of Alzheimer’s disease detection and treatment. Despite the value to the scientific community of these contributions, a large number of NACC UDS participants are not engaged in providing genetic samples limiting our advancements in this area of exploration. Despite the immense value of genetic samples, little is known about what individual and institutional factors may relate to genetic research engagement. Through exploration of existing basic demographic and clinical factors in the NACC database, such as age, education, race/ethnicity, cognitive abilities, and comorbid psychiatric disease, supplemented by institutional information on regulatory and scientific constraints obtained via center-completed surveyed, we will identify factors that relate to genetic research participation.