Barriers to engagement in genetic research

 
   Lead Investigator:    Shoshana Bardach
   Institution      :    University of Kentucky
   E-Mail           :    shbardach@uky.edu
   Proposal ID      :    913


   Publications:


1  Bardach SH, Jicha GA, Karanth S, Zhang X, Abner EL
   Genetic Sample Provision Among National Alzheimer's Coordinating Center Participants
   Journal Article  J Alzheimers Dis,1:123-133,2018,PMC6513699

   PUBLISHED



2  Bardach SH, Zhang X, Abner EL, Jicha GA
   Provision of Genetic Samples within Alzheimer's Disease Centers: Factors associated with Sample Availability
   Abstract  AAIC 2018,7:P1377,2018,

   PUBLISHED





   Proposal Description:
   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 (AD) at earlier stages, 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  AD detection and treatment. Despite the importance of genetic research for advancing the field, the  availability and generalizability of genetic data is clearly limited. Nearly two thirds (65.7) of NACC  participants between 2009 and 2016 do not have available genetic data in the National Alzheimer?s  Coordinating Center (NACC)/Alzheimer?s Disease Genetic Consortium (ADGC) databases. Genetic  research engagement varies considerably across sites, with some sites not submitting any genetic  samples to ADGC and others submitting genetic samples for as many as 65.9 of participants. On  average, sites submit genetic information on 31.4 of participants. Despite the immense value of genetic  samples, little is known about what individual (and or institutional) factors may relate to submitting  genetic samples to NACC, through NCRAD, in support of ADGC initiatives.  Overarching hypothesis: Exploration of existing demographic and clinical factors in the NACC database,  (age, education, race/ethnicity, cognitive abilities, comorbid psychiatric disease?etc.), will identify  barriers related to the availability of genetic information in NACC/ADGC (proxy for genetic research  participation).  Specific Aim 1: Characterize participants who do and do not have genetic data available in NIH/NIA/  NACC UDS/NCRAD/ADGC datasets in order to identify factors that may be independently associated  with availability of genetic data: Using adjusted logistic regression modeling,