Online community evolves into movement aimed at accelerating critical Alzheimer’s prevention research.
PHOENIX -- The Alzheimer’s Prevention Registry (APR) enrolled its 200,000th volunteer interested in participating in studies aimed at preventing the disease, a significant milestone in the fight against Alzheimer’s. Hosted and championed by Banner Alzheimer’s Institute (BAI), in collaboration with partner organizations and leading scientists, the Registry continues to establish itself as the vanguard of a national movement to prevent Alzheimer’s by accelerating enrollment into critical prevention research studies.
“The research to fight Alzheimer’s needs faster ways to evaluate promising prevention therapies and more efficient mechanisms to enroll interested participants in prevention trials,” said Jessica Langbaum, PhD, principal scientist at BAI, associate director of the Alzheimer’s Prevention Initiative (API) and director of the APR. “The greater the pool of potential participants, the faster researchers will be able to find treatments to end this disease as quickly as possible.”
In 2011, BAI launched the API to accelerate the pace of Alzheimer’s prevention research, and in 2012, it created the APR to help researchers overcome recruitment barriers and enroll interested individuals into studies.
The Registry is an online community of healthy individuals who are committed to fighting the disease, informing them about the latest developments in Alzheimer’s prevention research, and connecting those who may be interested with scientists carrying out the studies. The Registry is currently recruiting for 32 studies and is bringing on new opportunities every month that will tap the Registry’s resources to recruit the volunteers they need to begin their research.
Registry staff communicates closely with stakeholders in the international Alzheimer’s research community and provides information to Registry members about the latest developments in Alzheimer’s prevention research, scientific advances and overall brain health. The Registry also notifies members about research opportunities taking place in their communities and how to participate if they or someone they know may be interested. Anyone 18 or older with an interest in the fight against Alzheimer’s can join the Registry.
“We are excited about the exceptional size, continued growth and increasing value of the Alzheimer’s Prevention Registry,” said Eric Reiman, MD, BAI Executive Director. “It empowers stakeholders in the fight against Alzheimer’s disease, supports enrollment in prevention studies, addresses a major challenge to the evaluation of promising prevention therapies, and enables all of us to do our part to in the effort to find ones that work within a decade.”
To date the Registry has contributed to the successful recruitment into several studies. It has also led 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. 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.
“The Registry is enabling researchers to engage the public in a major way,” said Stephen Salloway, MD, MS, director of Neurology and the Memory and Aging Program at Butler Hospital in Providence, Rhode Island, and Professor of Neurology and Psychiatry at Alpert Medical School of Brown University. “By connecting interested individuals with game changing studies such as the A4 Study and API APOE4 Trial, the Registry is paving the way for the prevention of Alzheimer's disease. This milestone is a significant step in advancing Alzheimer’s research.”
Alzheimer’s is a debilitating and incurable disease that affects as many as five million Americans age 65 and older. Without the discovery of successful prevention therapies, the number of U.S. cases is projected to nearly triple by 2050. As Alzheimer's remains the only disease among the top 10 causes of death that has no cure or treatment, the Registry is urgently pushing to accelerate the pace of much-needed research by recruiting members both in the U.S. and internationally.
For more information, or to sign up, visit the Registry at www.endALZnow.org.
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 www.banneralz.org.
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 will conduct 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 has created the Alzheimer’s Prevention Registry 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 www.banneralz.org.