I recently had the pleasure of participating in a webinar presented by the Banner Alzheimer’s Institute (BAI) in Phoenix. The hour left me feeling energized and more hopeful than ever that we can beat this disease. Without question, there are some great things happening in the world of research, but we have to help.
What Is the Alzheimer’s Prevention Initiative?
BAI is a non-profit organization dedicated to groundbreaking research, and the Alzheimer’s Prevention Initiative is one of their most crucial projects.
Jessica Langbaum, Ph.D., Principal Scientist and Associate Director of the Initiative, is passionate about this endeavor, and for good reason. Almost two years ago, she lost her grandfather – formerly a successful engineer – to Alzheimer’s, and she’s committed to doing whatever she can to save other families from similar heartbreak.
The most essential component of the Initiative is the Alzheimer’s Prevention Registry, which was created to connect like-minded individuals interested in stopping this horrible disease in its tracks.
Members are kept apprised of the very latest news and information in the world of dementia research, but that’s just part of the mission. The Registry also seeks to create an unprecedented pool of potential study participants for prevention research.
How Does It Work?
It’s important to note that joining the Alzheimer’s Prevention Registry does not obligate you to participate in research. What it does do is arm you with the knowledge you need to be a more effective advocate, while providing information on the latest study opportunities in your own community. From there, the decision is entirely your own.
As you might expect, a common question is, “What might a typical study look like?”
Prevention studies take various forms. Participating can be as quick and easy as completing an online survey in the comfort of your living room or visiting a nearby research center once or twice.
Of course there are also larger randomized clinical trials. In these longer-term studies, participants are assigned to either an experimental group or a control group and are observed over time. Some of these projects involve investigational drugs while others focus on things like healthy lifestyle choices.
Why Does It Matter?
Over 5.2 million Americans are currently affected by Alzheimer’s or related dementias – a number that’s expected to triple by 2050. The economic impact is staggering. Consider this. The disease costs our country $203 billion annually and that will grow to $1.2 trillion by 2050 unless we find a way to slow or stop the progression.
If we stay on the current trajectory, by 2050, every Medicare and Medicaid dollar could be spent on dementia with nothing left over.
The Alzheimer’s Prevention Registry has set an ambitious goal of enrolling 250,000 healthy members, 100,000 of those by the end of 2013. Individuals age 18 and over of all races and ethnicities are welcome, whether or not they have a family history.
How Can I Get Involved?
According to Dr. Langbaum, as many as 85% of drug trials face delays because they are unable to attract or retain a sufficient number of participants. Quite simply, too few people are volunteering due to fear, concerns about time commitment, or just because they aren’t sure where to start.
The fact is, most Alzheimer’s studies never get off the ground because they fail to meet recruitment goals. The good news is we can all be a part of the solution by joining the Alzheimer’s Prevention Registry today, and asking our friends to do the same!
Remember, becoming a member opens the door to opportunities, but in no way obligates you to take part in any research.
The Banner Alzheimer’s Institute is a non-profit organization; however, I was compensated for this post. I’ve been a member of the Registry since May 2013.