Volume 15, Issue 4 p. 515-524
Featured Article

GeneMatch: A novel recruitment registry using at-home APOE genotyping to enhance referrals to Alzheimer's prevention studies

Jessica B. Langbaum

Corresponding Author

Jessica B. Langbaum

Banner Alzheimer's Institute, Phoenix, AZ, USA

Corresponding author. Tel.: +602-839-2548; Fax: +602-839-6936.

E-mail address: [email protected]

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Jason Karlawish

Jason Karlawish

Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA, USA

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J. Scott Roberts

J. Scott Roberts

Department of Health Behavior & Health Education, University of Michigan School of Public Health, Ann Arbor, MI, USA

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Elisabeth M. Wood

Elisabeth M. Wood

Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA

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Angela Bradbury

Angela Bradbury

Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA, USA

Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA

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Nellie High

Nellie High

Banner Alzheimer's Institute, Phoenix, AZ, USA

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Trisha L. Walsh

Trisha L. Walsh

Banner Alzheimer's Institute, Phoenix, AZ, USA

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David Gordon

David Gordon

Banner Alzheimer's Institute, Phoenix, AZ, USA

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Raj Aggarwal

Raj Aggarwal

Provoc, Washington, DC, USA

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Peter Davis

Peter Davis

Provoc, Washington, DC, USA

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Carter Stowell

Carter Stowell

Provoc, Washington, DC, USA

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Lane Trisko

Lane Trisko

Banner Alzheimer's Institute, Phoenix, AZ, USA

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Carolyn M. Langlois

Carolyn M. Langlois

Banner Alzheimer's Institute, Phoenix, AZ, USA

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Eric M. Reiman

Eric M. Reiman

Banner Alzheimer's Institute, Phoenix, AZ, USA

Neurodegenerative Disease Research Center, Arizona State University, Tempe, AZ, USA

Department of Psychiatry, University of Arizona, Tucson, AZ, USA

Neurogenomics Division, Translational Genomics Research Institute, Phoenix, AZ, USA

Arizona Alzheimer's Consortium, Phoenix, AZ, USA

Co-senior authors.

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Pierre N. Tariot

Pierre N. Tariot

Banner Alzheimer's Institute, Phoenix, AZ, USA

Co-senior authors.

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First published: 13 February 2019
Citations: 23

Abstract

Introduction

Recruitment for Alzheimer's disease (AD) prevention research studies is challenging because of lack of awareness among cognitively healthy adults coupled with the high screen fail rate due to participants not having 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.

Methods

Individuals aged 55-75 years who live in the United States and self-report not having a diagnosis of cognitive impairment such as MCI or dementia are eligible to join GeneMatch. Participants enroll online and are provided a cheek swab kit for DNA extraction and apolipoprotein E (APOE) genotyping. Participants are not told their APOE results, although the results may be used in part to help match participants to AD prevention studies.

Results

As of August 2018, 75,351 participants had joined GeneMatch. Nearly 30% of participants have one APOE4 allele, and approximately 3% have two APOE4 alleles. The percentages of APOE4 heterozygotes and homozygotes are inversely associated with age (P < .001).

Discussion

GeneMatch, the first trial-independent research enrollment program designed to recruit and refer cognitively healthy adults to AD prevention studies based in part on APOE test results, provides a novel mechanism to accelerate prescreening and enrollment for AD prevention trials.