Public Release: 

New program launched to advance Alzheimer's prevention research

GeneMatch to connect volunteers to research studies aimed at late-onset Alzheimer's

The Reis Group

PHOENIX, AZ (December 8, 2015) - Banner Alzheimer's Institute (BAI) announced the launch of GeneMatch, a first-of-its-kind program designed to identify a large group of people interested in volunteering for Alzheimer's research studies based in part on their APOE genetic information. GeneMatch, open to nationwide enrollment today, is a key part of the future of Alzheimer's prevention research because it has the potential to accelerate recruitment to aid in the discovery of treatments that may slow or prevent the progression of Alzheimer's disease.

The APOE gene is the best established genetic risk factor for late-onset Alzheimer's disease and GeneMatch allows for the identification of individuals who may be at varying degrees of genetic risk for developing symptoms of Alzheimer's disease and matching them to study opportunities in their communities.

"Research studies in healthy people at different levels of genetic risk for Alzheimer's promise to further clarify the earliest biological changes associated with the disease, clarify what genetic risk disclosure means to people in the new era of Alzheimer's prevention trials and find effective treatments to end Alzheimer's as quickly as possible," said Eric Reiman, MD, executive director at BAI and co-director of the Alzheimer's Prevention Initiative (API). "GeneMatch is intended to provide an unprecedented resource of genetically characterized research volunteers to do just that."

"GeneMatch is a novel program created to help accelerate enrollment in Alzheimer's-related research by matching people based on their APOE genotype," said Jessica Langbaum, PhD principal scientist at BAI, associate director of the API, and principal investigator of GeneMatch. "The new program will advance the study of people at different levels genetic risk for Alzheimer's and help find effective treatments to prevent this devastating disease as soon as possible."

Langbaum noted that studies using GeneMatch as a recruitment tool will seek to involve people at all risk levels. Genetic information will not be disclosed to program participants; however, studies recruiting from GeneMatch may require volunteers to learn their APOE genotype. Individuals are never under any obligation to participate in studies or learn their genotype. To help individuals understand the program, GeneMatch participants have the opportunity to take part in educational modules on Alzheimer's disease, APOE and the GeneMatch program so that they understand how genetics and other risk factors play a role in disease development.

The program will enroll people ages 55 to 75 living in the U.S. who are interested in participating in Alzheimer's-related studies and do not have a diagnosis of dementia or other cognitive impairment. The program intends to enroll tens of thousands of individuals.

Becoming involved in GeneMatch is a simple and straightforward process. After reviewing information on the website and consenting to join the program, individuals are provided a cheek swab kit, which they send back to the lab for APOE genetic testing. The information is loaded into the GeneMatch program in a strictly confidential way and individuals will be made aware of research studies for which they are a potential match. GeneMatch does not store genetic samples and strict privacy and security safeguards are in place.

GeneMatch is a program of the Alzheimer's Prevention Registry that was created in 2012 by the Banner Alzheimer's Institute as part of the API. The Registry provides an infrastructure to boost research study enrollment and already has more than 180,000 volunteers. GeneMatch will help fuel a key strategy of the Registry by enrolling substantial numbers of people who have particular and relatively rare types of the APOE gene.

API was established to rapidly evaluate potential new treatments in people prior to developing clinical symptoms of Alzheimer's who, based on their age and genetic background, are at highest risk of developing symptoms of the disease. The goal of API is to identify effective Alzheimer's prevention therapies.

Program leaders for GeneMatch have already identified the first research study that will use the program for participant recruitment - the API APOE4 Trial, a pioneering study, sponsored by and with funding from Novartis, in collaboration with Banner Alzheimer's Institute with funding from the National Institute on Aging, part of the National Institutes of Health (NIH). This collaborative effort is also funded by the Alzheimer's Association, FBRI, GHR Foundation, Banner Alzheimer's Foundation and Amgen. The trial aims to determine whether two investigational drugs can lower amyloid proteins in the brain in an effort to prevent or delay the emergence of symptoms of Alzheimer's in people at particularly high risk for developing the disease at older ages.

"Many families of patients with the disease have felt helpless after hearing about a loved one's Alzheimer's diagnosis," said Pierre Tariot, MD, director at BAI and co-director of the API. "GeneMatch gives those family members and any individual willing to take part in the fight against Alzheimer's the opportunity to take action and be part of the movement to end this disease before another generation is lost."

Reiman, Langbaum and Tariot acknowledged that research involving genetic testing can be particularly complex. Because of that, they have worked with other Alzheimer's researchers, as well as experts from leading organizations in the areas of genetic testing, disclosure and the law to ensure that people joining GeneMatch are equipped to handle these complexities.

"With more than five million Americans currently living with Alzheimer's disease in the United States and this number continuing to be on the rise, innovative research is crucial. The GeneMatch initiative is breaking new ground - leveraging genetic information as part of study recruitment as a way to accelerate the research process," said Maria Carrillo, PhD, chief science officer at the Alzheimer's Association.

While GeneMatch will begin in the U.S., plans are underway to expand to other countries. Individuals interested in participating in GeneMatch should go to http://www.endALZnow.org/GeneMatch and review information and enrollment criteria.

Alzheimer's experts and advocates from Banner Alzheimer's Institute, the Alzheimer's Prevention Initiative, the University of Pennsylvania, the University of Michigan, Arizona State University, the National Institute on Aging and the Alzheimer's Association will be conducting an online briefing on Tuesday, December 8 at 12:00pm ET to announce GeneMatch to the media and to stakeholders in the Alzheimer's community. Individuals interested in joining the briefing should reach out to the media contact listed above.

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About GeneMatch

GeneMatch is a program of the Alzheimer's Prevention Registry designed to identify a large group of people interested in participating in Alzheimer's research studies based on their genetic information. For more information, go to http://www.endALZnow.org/GeneMatch.

About the Alzheimer's Prevention Initiative

The Alzheimer's Prevention Initiative (API) is an international collaborative formed to launch a new era of Alzheimer's prevention research. Led by the Banner Alzheimer's Institute, the API conducts prevention trials in cognitively healthy people at increased genetic risk for Alzheimer's disease. It will continue to establish the brain imaging, biological and cognitive measurements needed to rapidly test promising prevention therapies and provide registries to support enrollment in future prevention trials. API is intended to provide the scientific means, accelerated approval pathway and enrollment resources needed to evaluate the range of promising Alzheimer's prevention therapies and find ones that work without losing another generation. For more information, go to http://www.banneralz.org.

About the Banner Alzheimer's Institute

Banner Alzheimer's Institute (BAI) is a nonprofit organization dedicated to the goal of ending Alzheimer's disease without losing another generation. It is helping to launch a new era of Alzheimer's research--detection, treatment and prevention at the pre-symptomatic stage--and to establish a comprehensive model of care that can be the national standard. BAI was founded in 2006 by Phoenix-based Banner Health, one of the country's largest nonprofit healthcare systems. For more information, go to http://www.banneralz.org.

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