By Alzheimer's Prevention Bulletin
This year the Alzheimer's Prevention Registry celebrates 10 years of connecting people with important information on Alzheimer's research along with studies and trials aimed at preventing this devastating disease. During the past decade, we've achieved many milestones and we have you to thank. We are indebted to you for your interest in the Registry and research, and your commitment to spreading the word.
Let's look back at how it all started.
"In 2009, Banner Alzheimer's Institute (BAI) brought together 40 thought leaders to brainstorm what prevention trials and a registry might look like," said Jessica Langbaum, PhD, Co-Director of the Alzheimer's Prevention Initiative program at BAI and leader of the Alzheimer's Prevention Registry. "We were challenged by our colleagues to create a user-friendly program that would help a range of Alzheimer's-focused studies with participant recruitment, not just our own studies."
The BAI team got to work, researching ways to reach hundreds of thousands of people to fill some very specific studies. They began by surveying similar registries in other health care fields and were inspired by the Army of Women. This registry for breast cancer research was simple since it didn't require too much information from registrants up front. Soon after, the Alzheimer's Prevention Registry was born.
The first few years focused on increasing our membership and spreading the word about the Registry and Alzheimer's prevention research. One of the first products was this Alzheimer's Prevention Bulletin, a monthly e-newsletter shining light on timely Alzheimer's research and information.
Over the decade, the Alzheimer's Prevention Registry achieved many important milestones including:
Promoted 151 Alzheimer's-focused studies and trials to our members. The Registry is now a widely used resource for Alzheimer's researchers, connecting members with a variety of Alzheimer's-focused studies.
Almost 100,000 people have signed up GeneMatch, a national program which uses genetic testing to match volunteers with research opportunities.
We've received several grants from the National Institute of Aging that support or leverage the Registry and GeneMatch. These grants, along with philanthropic funding, allowed our researchers to use our platforms to study the science of participant recruitment and engagement, with the goal of connecting with diverse audiences. Our programs are now models for other disease areas.
Featured in major national publications, such as NPR, Associated Press, and even Parade Magazine, we are raising awareness about our programs.
What's next? New grants will help us offer you more features. Soon a member portal will allow you to customize your experience by choosing your preferred method of communication, customizing your research matchmaking, and saving studies. Additional features will be added on a rolling basis. Of course, these are in addition to our most important objective – bringing more and more studies to your inbox.
"We are extremely grateful to the more than 375,000 people who have joined the Alzheimer's Prevention Registry," said Langbaum. "We are steadfast in our commitment to bring you the latest information on Alzheimer's disease and prevention research, and connect you with studies in our ongoing effort to prevent and end this disease."