For years, the Banner Alzheimer’s Institute has had a simple goal: end Alzheimer’s. The organization has focused on raising awareness, improving quality of care and supporting research to find a cure. Their Alzheimer’s Prevention Registry is a groundbreaking effort to accomplish all of these goals and efficiently search for a cure. Find out more here.
For Jessica Langbaum, the Associate Director of the Alzheimer’s Prevention Initiative (API) at Banner Alzheimer’s Institute, the mission to end Alzheimer’s is personal. Her grandfather had the disease.
“It certainly gives real world importance to the work I’m doing,” Langbaum told Guideposts.org. “It made what can be abstract very real, watching my grandmother and him go through this process, and of course my mother and her siblings starting to get fearful for themselves.”
Langbaum said although her family’s connection with Alzheimer’s keeps her motivated to find a solution, it was the organization’s overall vision that inspired her to stay with Banner Alzheimer’s Institute following a post-doctoral fellowship in 2007.
The Alzheimer’s Prevention Registry was born out of a desire to increase the speed of Alzheimer’s studies, and in doing so, the speed of finding a cure.
“There’s a staggering statistic that 80 percent of all research studies don’t meet their recruitment goals,” Langbaum said. “Most people don’t think about participating in a research study while they’re still healthy.”
This means that researchers spend excessive time trying to find study participants instead of actually conducting research. Filling studies only gets more difficult when attempting to study a rare segment of the population, Langbaum said, adding this can lead to researchers screening tens of thousands of people to find several hundred who might be eligible to participate.
Banner, recognizing the need to shorten the process and help researchers do their work, created the API.
“[API] is a collaborative endeavor to do cutting-edge prevention trials in people who [are] at risk for developing symptoms due to Alzheimer’s disease,” Langbaum said. “These recruitment registries try to accelerate the enrollment into these studies.”
The registry is open to all and has a low barrier to entry. Anyone can go to their website and join the registry by entering some basic information, such as email, name and date of birth. Registering doesn’t commit participants to anything, except receiving emails from Banner.
“Signing up allows us to communicate via email,” Langbaum said. “[We can then] notify these individuals when there are new study opportunities for which they might be eligible.”
Individuals are under no obligation to join a study once they’ve joined the registry and their personal information is protected.
“First and foremost our goal is to protect the registry member’s privacy and confidentiality so we never share enrollee’s information without their explicit permission,” Langbaum said. “We never share our registry member’s information without explicit permission at each point along the way.”
Langbaum said Banner currently doesn’t have a specific numeric goal for the registry. However, with more than 300,000 people already signed up, they plan to recruit until a cure is found and the registry is no longer needed.
Researchers have been able to fill studies in days instead of months and studies that usually struggle to find participants have had people from the registry reach out to them.
“There’s a research study out there for everyone,” Langbaum said. “It’s going to take people from a variety of walks of life and experiences for us to help find answers to this disease…It’s hard to find somebody who hasn’t been touched somehow by [Alzheimer’s]. Sometimes you feel hopeless but I think this is a way where you can turn something into action.”
Find more information and join the registry here.
This story was created in partnership with the Banner Alzheimer’s Institute.
