F4‐02‐04: The Alzheimer's Prevention Initiative (API) Program: Genetic Testing and Disclosure Strategies

• DOI: 10.1016/j.jalz.2016.06.595
• Publication Date: 2016-10-17T07:29:34Z
• Authors: Jessica B. Langbaum; Jason Karlawish; Angela R. Bradbury; Elisabeth MCarty ...; J. Scott Roberts; Scott Kim; Linda Patrick-Miller; Deborah Blacker; Richard J. Caselli; Gary E. Marchant; Doris Zallen; Carolyn Langlois; Trisha Walsh; David Gordon; Eric M. Reiman; Pierre N. Tariot
• Keywords: Apolipoprotein E

The Alzheimer's Prevention Initiative (API) is a collaborative funded by the NIH, philanthropy, and industry to conduct preclinical disease (AD) trials in people who, based on age genetics, are at elevated risk of developing AD symptoms. API's Generation Study enrolling apolipoprotein E (APOE) e4 homozygotes 60-75. To support this future trials, API established an interdisciplinary APOE Genetic Testing Disclosure Committee whose aims include establishing genetic testing program enrich referrals studies, known as GeneMatch; updating estimates; evaluating disclosure its impact. GeneMatch trial-independent performing genotyping individuals 55-75 prevention studies. uses buccal swab kits sent via mail does not disclose results participants, either directly or inadvertently through referral Recruiting however, may ask invite learn their results. includes standardized genotype assessment psychological effects disclosure. A separate, investigator-initiated ancillary study, CONNECT 4 APOE, examining feasibility efficacy remote delivery (phone vs. real-time videoconferencing) methods for disclosing Other investigator-initiated, studies examine impact objective subjective cognitive functioning ("stereotype threat"), effect families. launched 2015 enroll tens thousands participants. November 2015; enrollment ongoing. Stereotype Threat, Impact Families will launch 2016. Results from these efforts be presented. key element API, facilitating into range research including Study. Study's help determine across different modes enhance appreciation psychosocial implications high-risk results, with lessons clinical practice precision medicine, well genetically enriched populations.