endALZnow.org & GeneMatch Program

Organization Overview

The Alzheimer’s Prevention Registry (APR), hosted by Banner Alzheimer’s Institute in Phoenix, Arizona, is a national online registry that connects adults interested in Alzheimer’s disease research with Alzheimer’s-focused studies. Launched in May 2012, the APR is a central component of the Alzheimer’s Prevention Initiative (API), a global program pioneering clinical trials in cognitively normal individuals at elevated genetic or biological risk of developing Alzheimer’s. The APR is specifically designed to build and maintain a ready pool of volunteers for Alzheimer’s-related trials and observational studies, with an emphasis on prevention trials.

Clinical Trial Recruitment Resource

Adults ages 18 and older can register at endALZnow.org by providing basic demographic information. Registrants receive regular email communications with Alzheimer’s research news and notifications about study opportunities in their region. When studies open, APR members can express interest and authorize the APR to share their contact information with the enrolling study team. Study sponsors contract with the APR to have their study opportunity shared with appropriate registrants. The GeneMatch program, embedded within the APR, is open to U.S.-based adults ages 50–90 without cognitive impairment and involves APOE genotyping via a home buccal swab. GeneMatch does not return APOE results to participants but uses genotype data to match individuals to APOE4-enriched trials, substantially improving pre-screening efficiency.

Metrics

Registry Size: 389,000+ registered individuals as of mid-2026 (launched 2012)
GeneMatch Participants: 110,000+ individuals genotyped for APOE status
Geographic Reach: All 50 U.S. states including Washington, D.C.
Studies Promoted: 235+ Alzheimer’s-focused studies promoted to members (as of mid-2026)
Demographics: Mean age 69 years; 75% female; 93% cognitively unimpaired; 56% family history of AD

Discussion

Alzheimer’s prevention trials require a very specific and rare population: cognitively normal older adults who are willing to undergo invasive or burdensome screening procedures (PET scans, lumbar punctures, blood draws) and commit to years of follow-up before they have any symptoms. These individuals are not in clinical care for Alzheimer’s, making traditional healthcare-referral recruitment channels ineffective. The APR solves this by maintaining a large, motivated registry of volunteers who have already expressed interest in research participation. GeneMatch adds a powerful pre-screening layer, enabling sponsors to identify APOE4 carriers, who have elevated disease risk and are therefore enriched in value for AD-related trials and observational studies — before spending resources on clinical screening.