Dear Brain Health Registry Participants and Study Partners,
Last month we celebrated 3 years since launching the Brain Health Registry and I couldn’t be happier. Thanks to you, and more than 53,000 dedicated volunteers like you, we’ve collected an extraordinary amount of information on brain health. Many of you return over and over to provide current information about yourselves, and/or study partners, resulting in valuable information about how brain function changes over time. Many have completed brain tests not just once, but again at follow-up visits. We now have data from over 148,000 brain tests, a huge accomplishment as this would take years to achieve using traditional collection methods.
Recently I returned to the website for my own bi-annual follow-up and completed all questionnaires, as well as challenging brain tests. I realize that we ask for a lot of information – more than you may be comfortable sharing or have the time to give – so it’s very special that you volunteer to participate in our project. Please know that whatever study tasks you complete is greatly appreciated.
What’s more, thousands of you are participating as study partners that provide important information and unique insights about another person in the Brain Health Registry. So far, it appears that online data shared by study partners can give an accurate picture of a person’s memory and thinking. We are excited to expand this effort and hope the Study Partner Portal can someday be used by many different researchers and healthcare providers.
Even more impressive, we did all of this using the internet! You’re helping show that the internet is an efficient and cost-effective mode to collect large volumes of data. In this way, the Brain Health Registry continues to play an important role in demonstrating that the internet can be used as an effective method for conducting neuroscience research. And with a $400 million Congressional increase in funding for Alzheimer’s research, I am tremendously optimistic that new advancements in the field will soon take place, perhaps by leveraging the internet for research.
As a research investigator, I’ve studied Alzheimer’s and aging for more than 25 years. However, my passion to learn more about this disease isn’t merely professional. Last year my mother passed away from Alzheimer’s, so I have first-hand knowledge of this devastating disease and the toll it takes on families. I wanted to communicate a message of deep gratitude to all of you.
You are involved in an innovative and potentially high-impact project. The Brain Health Registry is the largest website registry that captures large amounts of information about brain health from participants and study partners at multiple time points. We are working hard to use results from this project to advance brain health research. We hope that one day, our results will help develop methods to identify people who are “at risk” for future cognitive decline. We truly believe that this work will help many people in the long run, and we couldn’t do any of it without you. You are a Brain Health Registry Hero and we are most grateful.
Please continue to login and complete study tasks. Please encourage your friends and family to join our study. Please keep spreading the word.
Michael Weiner, MD
Professor of Radiology and Biomedical Imaging, Medicine, Psychiatry and Neurology, University of California, San Francisco
Principal Investigator, Brain Health Registry
Dr. Weiner is the founder and Principal Investigator of the Brain Health Registry. He is a physician and Alzheimer’s researcher with over 800 peer reviewed publications in scientific journals. Dr. Weiner is also the Principal Investigator of Alzheimer’s Disease Neuroimaging Initiative, the largest NIH funded observational study of Alzheimer’s disease.