GeneMatch: A Program of the Alzheimer's Prevention Registry to Match Individuals to Studies Based on Apolipoprotein E (APOE) Genotype
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Alzheimer Disease. Basic parameters: 50 years — 90 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Alzheimer's Prevention Registry GeneMatch Program
Overview
The purpose of the Alzheimer's Prevention Registry GeneMatch program is to identify a large group of people interested in participating in research studies or clinical trials based in part on their genetic background. This genetic information will be used to match interested individuals to studies, providing a recruitment resource to the Alzheimer's scientific community. Interested individuals should visit www.endALZnow.org/GeneMatch to join the GeneMatch program.
Detailed description
The primary objectives of the Alzheimer's Prevention Registry GeneMatch program are to (1) identify and characterize a large cohort of people who are interested in, and may be eligible to participate in, current and future preclinical Alzheimer's disease research studies and clinical trials based on their genetic background, and (2) provide information to these individuals about research studies for which they may be eligible, based in part on their genetic background. Cognitively unimpaired individuals age 50 to 90, inclusive, are eligible to enroll in GeneMatch. GeneMatch will provide participants with a genetic sample kit (a cheek swab) to test for a specific gene called apolipoproteins E (APOE). GeneMatch does not disclose the results of the APOE test to participants. GeneMatch may use the APOE test results to match participants to research studies. Participants are under no obligation to pursue these study opportunities.
Primary outcome measures
- Number of individuals who enroll in GeneMatch [Time frame: 15 years]
Secondary outcome measures (2)
- Number of individuals referred to research studies [Time frame: 15 years]
- Number of individuals who enroll in research studies [Time frame: 15 years]
Eligibility criteria
Inclusion criteria
- Age 50-90, inclusive
- Provide basic demographic, medical history, and contact information
- Consent to APOE genotyping without receiving results
- Live in the United States
Exclusion criteria
- Unable to comply with this project's protocol requirements
- Self-reported diagnosis of dementia or any other objective cognitive impairment syndrome
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- Banner Alzheimer's Institute — Phoenix
Publications
- Langbaum JB, Karlawish J, Roberts JS, Wood EM, Bradbury A, High N, Walsh TL, Gordon D, Aggarwal R, Davis P, Stowell C, Trisko L, Langlois CM, Reiman EM, Tariot PN. GeneMatch: A novel recruitment registry using at-home APOE genotyping to enhance referrals to Alzheimer's prevention studies. Alzheimers Dement. 2019 Apr;15(4):515-524. doi: 10.1016/j.jalz.2018.12.007. Epub 2019 Feb 13. PMID 30772251
- Stites SD, Dedhia M, Harkins K, Karlawish J, Langbaum JB, Mather M, Barber SJ. Learning about a heightened genetic risk for dementia: Expected stigma is greater than experienced stigma. Psychol Aging. 2026 Feb 23. doi: 10.1037/pag0000970. Online ahead of print. PMID 41729767
Identifiers
NCT: NCT02564692 · APR-001