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Alzheimer’s Prevention Registry: A Dynamic Approach

By Barbara Worthington

An initiative aimed at engaging thousands of people by June 2015 seeks to attract participants interested in medical research studies related to Alzheimer’s disease prevention. 

The facts about Alzheimer’s disease are as frightening as they are staggering: More than 5 million Americans currently live with the disease, which ranks as the sixth leading cause of death. Equally sobering is the absence of a prevention or cure that can halt the scourge of the disease that threatens to expand in numbers to encompass nearly 16 million Americans aged 65 and older by 2050, according to the Alzheimer’s Association.

In 2014, the direct costs in the United States to care for Alzheimer’s disease patients totals an estimated $214 billion, including $150 billion in Medicare and Medicaid costs. By 2050, Alzheimer’s disease costs are expected to reach an estimated $1.2 trillion (in today’s dollars).

Jessica Langbaum, PhD, principal scientist and associate director of the Alzheimer’s Prevention Initiative at Banner Alzheimer’s Institute in Phoenix, recently outlined the importance of enlisting participants in studies designed to develop methods to prevent Alzheimer’s disease. Her prevention efforts focus on new strategies that utilize advanced brain imaging and applied genomics.

She notes the disappointing statistics surrounding recruitment efforts for Alzheimer’s disease trials. Nearly 80% of such studies fail to meet their recruitment goals. Researchers may consider and evaluate as many as 30,000 individuals to reach the 2,000 participant threshold necessary to launch a study.

Because of the difficulty researchers have encountered in identifying prospective study participants, the Alzheimer’s Prevention Registry has been launched to open the lines of communication among researchers, Alzheimer’s disease patients, and caregivers. The registry provides a vehicle through which participants can receive e-mails about Alzheimer’s disease prevention studies and related research news. An individual’s sign-up to participate in the registry is the first step in creating the opportunity to participate in any studies he or she chooses or for which he or she might quality.

The ambitious initiative, launched by the Banner Alzheimer’s Institute in 2012, plans to enlist thousands of people throughout the United States who want to access information and possibly participate in medical research studies related to Alzheimer’s disease prevention. Banner’s specific hope is to enroll 250,000 people in the registry by June 2015.

Via the registry, periodic e-mails provide information specific to brain health and news of scientific advances. Also included are questionnaires and surveys, information on brain imaging studies, and pharmaceutical trials to evaluate investigational medications and therapies. Registry information includes notices and information about prevention trials and participation opportunities.

Registration involves no obligation to participate in any study or clinical trial. It acts simply as a vehicle for communication and a forum for the exchange of Alzhiemer’s disease-related information. Various studies, of course, have specific sets of eligibility requirements so not every individual will qualify for enrollment in any particular study. Langbaum notes that registry participants’ privacy and confidentially are meticulously safeguarded. Any and all studies associated with the Alzheimer’s Prevention Registry receive the approval of an ethics committee.

To participate in the registry or learn more about it, visit www.endalznow.org?utm_campaign=alzheimers-awareness-month&utm_medium=referral&utm_source=todaysgeriatricmedicine.com&utm_content=taking-action-against-alz&utm_term=alzheimers-prevention-registry.

— Barbara Worthington is the editor of Today’s Geriatric Medicine.