INTRODUCTION: The apolipoprotein E (APOE) gene is the strongest known genetic risk factor for sporadic Alzheimer disease (AD). APOE can be used as an enrichment strategy or inclusion criterion for AD prevention trials. Personal genomics companies market direct-to-consumer (DTC) genetic tests, including APOE. We assessed DTC APOE testing usage among enrollees of the University of California Irvine Consent-to-Contact Registry, an online recruitment registry, and attitudes toward using this information in clinical trial recruitment. METHODS: We emailed links to an electronic survey to registry enrollees age 50 years or older. We assessed participants' use of DTC services, willingness to learn APOE status, and willingness to share genetic information. Logistic regression models assessed relationships between DTC testing usage and demographic characteristics, and with willingness to share results to assist trial recruitment. RESULTS: Among 1312 responders (57% response rate), few (7%) had used DTC testing for APOE. Non-Hispanic Asian enrollees were 93% less likely to have used DTC testing, compared with non-Hispanic Whites [95% confidence interval: (0.01, 0.67)]. Willingness to share APOE information for study recruitment was >90% for both users and nonusers. CONCLUSIONS: Matching participants to trials on the basis of DTC APOE information may be an effective way to streamline AD prevention trial recruitment.
INTRODUCTION: The apolipoprotein E (APOE) gene is the strongest known genetic risk factor for sporadic Alzheimer disease (AD). APOE can be used as an enrichment strategy or inclusion criterion for AD prevention trials. Personal genomics companies market direct-to-consumer (DTC) genetic tests, including APOE. We assessed DTC APOE testing usage among enrollees of the University of California Irvine Consent-to-Contact Registry, an online recruitment registry, and attitudes toward using this information in clinical trial recruitment. METHODS: We emailed links to an electronic survey to registry enrollees age 50 years or older. We assessed participants' use of DTC services, willingness to learn APOE status, and willingness to share genetic information. Logistic regression models assessed relationships between DTC testing usage and demographic characteristics, and with willingness to share results to assist trial recruitment. RESULTS: Among 1312 responders (57% response rate), few (7%) had used DTC testing for APOE. Non-Hispanic Asian enrollees were 93% less likely to have used DTC testing, compared with non-Hispanic Whites [95% confidence interval: (0.01, 0.67)]. Willingness to share APOE information for study recruitment was >90% for both users and nonusers. CONCLUSIONS: Matching participants to trials on the basis of DTC APOE information may be an effective way to streamline AD prevention trial recruitment.
Authors: Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde Journal: J Biomed Inform Date: 2008-09-30 Impact factor: 6.317
Authors: D S Knopman; S T DeKosky; J L Cummings; H Chui; J Corey-Bloom; N Relkin; G W Small; B Miller; J C Stevens Journal: Neurology Date: 2001-05-08 Impact factor: 9.910
Authors: Jing Qian; Frank J Wolters; Alexa Beiser; Mary Haan; M Arfan Ikram; Jason Karlawish; Jessica B Langbaum; John M Neuhaus; Eric M Reiman; J Scott Roberts; Sudha Seshadri; Pierre N Tariot; Beth McCarty Woods; Rebecca A Betensky; Deborah Blacker Journal: PLoS Med Date: 2017-03-21 Impact factor: 11.069