We are thrilled to begin the New Year with over 50,000 participants in Brain Health Registry! We are grateful for your help in achieving this significant milestone, and cannot thank you enough for your efforts to help scientists better understand brain disease.
With your help, we accomplished a ton in 2016. Below are a few of the year’s highlights we are proud to share:
- In the summer of 2016 we started to roll out our Brain Health Registry Study Partner Portal, an exciting new initiative that allows Brain Health Registry participants and their study partner to work as a team to advance brain health research and the search for new treatments. So far we’ve captured the unique and powerful voices of over 2000 study partners! Please stay tuned for our next newsletter to learn more about our plans to expand the Study Partner Portal this year.
- Nearly 1000 Brain Health Registry participants enrolled in the cutting-edge Smell Study, designed to help scientists better understand how our ability to smell relates to changes in thinking and memory. We are encouraged by the overwhelming response of Brain Health Registry participants eager to participate in this study, conducted by our partners at the Monell Chemical Senses Center.
- Brain Health Registry is thrilled to be involved in the IDEAS (Imaging Dementia – Evidence for Amyloid Scanning) Study led by the Alzheimer’s Association and supported by groups including the American College of Radiology. The IDEAS Study is ramping up and will enable more than 18,000 Medicare beneficiaries to receive Medicare coverage for a brain amyloid PET scan. Researchers hope to show that increased access to PET scans will enable earlier detection and diagnosis of changes in thinking and memory, which may lead to better care and treatment of symptoms for patients. The information provided by Brain Health Registry participants will help advance brain health research and will be used to connect participants to other research studies, as well. Caregivers or care partners will also have the opportunity to participate, which will help us learn more about their caregiving experience and how it affects their health.
- Brain Health Registry is also partnering with the Alzheimer’s Disease Neuroimaging Initiative (ADNI). ADNI—a long-running, National Institutes of Health-supported study—entered a new critical phase with the recent launch of ADNI3. Led by Dr. Michael Weiner, ADNI is one of the largest public-private partnerships in Alzheimer’s disease research. Brain Health Registry will be referring interested Brain Health Registry participants to ADNI sites all over the country to enroll in ADNI3. Additionally, researchers will be able to follow ADNI3 participants over time by having them participate in Brain Health Registry.
Lastly, Alzheimer’s and the field of brain health research made major news in 2016. These were a few of the headlines that gripped us this year:
- The Alzheimer’s Laboratory on 60 Minutes
- Eli Lilly Alzheimer’s Experimental Alzheimer’s Drug Fails in Large Trial
- Parkinson’s Disease May Be Traced From Gut Bacteria
- Could Alzheimer’s Stem From Infections? It Makes Sense, Experts Say
- Caregivers of People With Dementia Face Financial Hardships
With your help, we can continue to accelerate clinical trials aiming to develop treatments for Alzheimer’s, Parkinson’s, PTSD, and other brain disease. Thank you again for all your support.