Abstract Details

Title GeneMatch: A Novel Recruitment Registry using APOE Genotyping to Accelerate Referrals to Alzheimer’s Prevention Studies

Topic Aging, Dementia, and Behavioral Neurology

Presentation(s) P4 - Poster Session 4 (5:30 PM-6:30 PM)

Poster/Presentation
Number 9-004

Objective

Describe the design and execution of, findings, and key lessons learned from GeneMatch, a trial-independent recruitment registry to match individuals to Alzheimer’s disease (AD) prevention studies based in part on APOE genotype.

Background Recruitment for AD prevention research studies is challenging. A large number of healthy adults screen fail because of a lack of either a genetic risk factor or biomarker evidence of the disease. Participant recruitment registries offer one solution for efficiently and effectively identifying, characterizing, and connecting potential eligible volunteers to studies.

Design/Methods Individuals age 55-75 who live in the US and self-report not having a diagnosis of cognitive impairment are eligible to join GeneMatch, either online or at one of 36 partner healthcare sites. Participants enroll via the GeneMatch website and are provided a cheek swab kit for DNA extraction and APOE genotyping. Participants are not told their APOE results, though results may be used in part to help match participants to AD prevention studies and disclosed by the enrolling study.

Results

As of October 2018, 81,894 participants had joined GeneMatch. Nearly 30% of participants had one APOE4 allele, approximately 3% had two APOE4 alleles. The percentages of APOE4 heterozygotes and homozygotes are inversely associated with age (p<0.001). Currently, the API Generation Program trials and two observational studies are using GeneMatch as a recruitment tool. Although enrollment is not yet complete in these studies, to date GeneMatch has been the most successful recruitment mechanism for the API Generation Program in the US.

Conclusions GeneMatch has demonstrated it is feasible to enroll tens of thousands of adults across the US into a predominantly online, trial-independent genetic recruitment registry. Majority of enrollees complete their cheek swab at home and return it to the laboratory for genetic testing in order to be matched to an AD prevention study.

Authors/Disclosures
Jessica Langbaum, PhD PRESENTER	Dr. Langbaum has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alector. Dr. Langbaum has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Denovo Biopharma. Dr. Langbaum has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. The institution of Dr. Langbaum has received research support from Eli Lilly.
Pierre Tariot (Banner Alzheimer's Institute)	Pierre Tariot has received personal compensation for serving as an employee of Banner Alzheimer's Institute. Pierre Tariot has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Abbvie. Pierre Tariot has received personal compensation in the range of $500-$4,999 for serving as a Consultant for AC Immune. Pierre Tariot has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Axsome. Pierre Tariot has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for WebMD. Pierre Tariot has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Arcadia. Pierre Tariot has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Pierre Tariot has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for BioXcel. Pierre Tariot has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Cortexyme. Pierre Tariot has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Eisai. Pierre Tariot has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for eNOVA. Pierre Tariot has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Pierre Tariot has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Syneos. Pierre Tariot has received intellectual property interests from a discovery or technology relating to health care.
	No disclosure on file
	No disclosure on file
Jason H. Karlawish, MD	No disclosure on file
	No disclosure on file
Elisabeth M. Wood, MSCGC (Univ. of Pennsylvania CNDR)	No disclosure on file
	No disclosure on file
	No disclosure on file
	No disclosure on file
Eric M. Reiman, MD (Banner Alzheimer's Institute)	Dr. Reiman has received personal compensation in the range of $50,000-$99,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Denali, Green Valley, Zinfandel, and Takeda. Dr. Reiman has received stock or an ownership interest from Alkahest, Alzheon, Aural Analytics, Denali, and United Neuroscience.. Dr. Reiman has received intellectual property interests from a discovery or technology relating to health care. Dr. Reiman has received personal compensation in the range of $500-$4,999 for serving as a Member, National Advisory Council on Aging (NACA) with NIA.

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