“Do at least one thing.”
~Dan Gasby, husband and care partner to Barbara “B” Smith.
*NOTE: The Linda Gray contest has ended, but we encourage you to join the Registry using the following link: https://my.brainhealthregistry.org/register
What is the Brain Health Registry?
Did you know that as many as 9 out of 10 people who sign up for a clinical trial don’t make it through the screening process? One of the greatest obstacles our researchers face is finding enough qualified subjects, and the cost of this – in both time and money – is astounding. This alone significantly impedes the process of research projects and, in fact, is the reason for failure in many cases.
The researchers behind the Brain Health Registry aspire to use the program to build out a pool, or registry, of potential clinical trial enrollees. The hope is that by collecting data on participants through online games and activities, the right people can be assigned to studies faster, ultimately accelerating trials.
Dr. Michael Weiner1 directs the registry and is a professor of radiology and biomedical engineering, medicine, psychiatry and neurology at the University of California San Francisco. He describes the registry as “… a funnel where a lot of people come in and it leads to many smaller funnels, depending on the individual.” He believes this process should considerably reduce the number of “screen fails.”
The registry currently has 36,000 members, and the goal is to reach at least 40,000 by third quarter of this year.
How Does It Work?
Participants sign up on a website and complete several questionnaires regarding medical history, lifestyle, and current health. Users can complete the questions as they have time; if they don’t finishing in one sitting, they can come back and pick up right where they left off. The developers of this tool clearly designed it with usability and convenience in mind.
Once the questionnaires are finished, the next step is to complete some tests that might be likened to brain games. Each activity takes just a few minutes and can also be done at the participant’s convenience, not necessarily all in one session.
At 3-6 month intervals, registry members receive email reminders to come back and complete additional activities. The hope is that people will continue to be involved for many years, as the longevity of participation helps researchers understand how our brains change over time.
As data is collected and analyzed, some people will have an opportunity to increase their level of participation. This might include genetic screening, providing blood samples, sharing medical records, or even participating in a clinical trial. Keep in mind all of these additional activities are completely voluntary.
Why Should I Join?
While building a pool of potential study participants through the questionnaires and online tests, the BHR is also pre-screening those individuals. Just having this pre-screened pool could literally reduce shave years off of lengthy studies. Data collected can be used to match people with the clinical trial that suits their specific set of circumstances.
Researchers who are able to enroll study participants from the BHR pool will have access to valuable historical data – potentially collected over years – based on the periodic online activities. This is referred to as a longitudinal study; a research study that involves repeated observations of the same variables over extensive periods of time. For Alzheimer’s in particular, because brain changes are believed to begin a decade or more before symptoms present, this historical data could be game changing!
The registry provides all of us an opportunity to make a real impact in the fight to stop Alzheimer’s. It’s free to join, and an easy way to do your part! Your participation matters!!
Joining Together to Find a Cure
Respected leaders in Alzheimer’s research and advocacy from around the nation are partnering with UCSF to make this project a success. A few of those partners are the Cleveland Clinic’s Lou Ruvo Center for Brain Health, the Alzheimer’s Prevention Registry, Luminosity, the Alzheimer’s Drug Discovery Foundation, the Alzheimer’s Association TrialMatch Program, Brigham & Women’s Hospital, Massachusetts General Hospital, and the Global Alzheimer’s Platform Foundation! Now that’s a pretty impressive list!
Additionally, as part of her own Alzheimer’s advocacy efforts, actress Linda Gray is lending her support to the Brain Health Registry! Linda is well known for her role as Sue Ellen Ewing on the iconic television drama, Dallas. You might say Sue Ellen was the original desperate housewife!
Anyone who joins BHR between now and May 15,2016, will be entered in a drawing to win lunch with Linda! The winner will be selected at random, and the prize includes lunch, flights, and accommodations for two! Click HERE to JOIN NOW! It’s free, and you might just be the lucky winner!
1Source: San Francisco Business Times
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