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Alzheimer's Association International Conference 2026
July 12-15, 2026 | London, United Kingdom, and Online
10440
National Institute On Aging Alzheimer's Family-based Study Genetic Result Sharing Protocol: Insights From The Initial Implementation
Poster Presenter
Authors
Amanda Chan, Malia Rumbaugh, Dolly Reyes-Dumeyer, Julia Castro, Pamela Del Rosario, Jenverly O'Brien, Iida Linkka, Kelly Jo Horner, Ashley LaRoche, Emi Varfaj, Jeremy Tanner, Ana Pereira, Tatiana Foroud, Richard Mayeux
Affiliations
UT Health San Antonio, Columbia University Medical Center, Indiana University, Col, Mount Sinai
Part of Topic
Background
•The National Institute on Aging Alzheimer’s disease Family Based study (NIA AD FBS) started in 2003 and has recruited over 1,400 families.
•Study participants did not receive genetic testing results in past iterations of the protocol
•A new genetic results sharing protocol was developed to inform participants of results associated with autosomal dominant dementia
Methods
•Eligible participants were offered CLIA-certified genetic results in genes associated with autosomal dominant dementia (APP, PSEN1, PSEN2, MAPT, GRN, C9orf72)
•Participants (or their proxy) received pre- and post-test genetic counseling with a certified genetic counselor
•Demographics and pre- and post- genetic test surveys were given to the subset of participants who received genetic testing results and had the cognitive capacity to complete questionnaires
•Data analysis utilized descriptive statistics
Results
•Most participants’ results were not diagnostic (negative and uncertain) (89%, n=25)
•Of participants who completed the questionnaires (n=8), the majority understood what results meant for themselves (75%, n=6)
•75% (n=6) were not at all or only a little uncertain regarding implication of results for family members
•While most participants did not receive a genetic explanation for their symptoms, the majority (89%, n=7) indicated results were somewhat to a great deal helpful for future planning and were not frustrated about recommendations for care based on genetic results (75%, n=6).
Conclusion
Our project demonstrates the feasibility of implementation and attitudes regarding receiving genetic results among participants with Alzheimer’s disease or mild cognitive impairment. Participants demonstrated that non-diagnostic genetic results were still informative for future planning and there was limited frustration for care implications of results.
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