Brain Health Registry Newsletter - November 2018

November 2018

Now more than ever, there is a critical need to identify individuals who are at risk for Alzheimer’s disease. Here at the Brain Health Registry (BHR), we believe in leveraging the Internet to help meet this need. We thank you for your participation in the BHR, which allows us to address this important challenge.

Recently Published Study Partner Research

Is there someone in your life who knows you really well (perhaps even better than you sometimes know yourself)? And could information provided by this person help investigators in their research? Last month Dr. Rachel Nosheny, BHR Co-Investigator and Assistant Professor of Psychiatry at UCSF, published research findings on this topic.

Dr. Nosheny was specifically interested in better understanding how online information provided by a friend or family member of a study participant, known as a study partner, can be used to help identify memory decline. Her analysis showed that study partner-reported information helped identify individuals who perform worse on brain performance tests. What’s more, study partners also helped identify individuals likely to have diagnosed memory problems, such as Mild Cognitive Impairment or Alzheimer’s disease.  These results support the use of online study partner data for future Alzheimer’s and brain aging research.

New BHR Funding Collaboration

BHR was recently awarded grant funding from the National Institute on Aging to develop and test new online tools that assess a person’s memory and thinking, as well as their ability to perform everyday tasks.  In collaboration with multiple institutions, including Washington University, University of Alabama at Birmingham, and the Mayo Clinic, BHR plans to adapt existing measures for online use.

One such tool, the Clinical Dementia Rating Scale, is a dementia screening instrument that traditionally relies on a trained administrator to do a lengthy interview with an individual and their study partner. This new BHR initiative seeks to create an online version of the Clinical Dementia Rating Scale that will be more survey-like, and can be completed by participants and study partners without an administrator. Overall, the goal is to greatly improve the efficiency of identifying those with dementia and cognitive decline.

These new research findings and initiatives highlight the importance of including the voices of affected individuals AND their study partners in brain health research. 

How do I invite a study partner?

A unique feature of BHR is that we capture information from participants and their study partners.  If you have not already done so, we encourage you to invite someone to be your BHR study partner! To do this, simply log into the BHR and complete the “My Study Partner” task. Study partners are asked to complete questionnaires about themselves and the participant who invited them to join.

BHR participants now can complete the “My Study Partner” task annually, with more options for inviting a study partner. For instance, if you previously said that you did not have or want someone to participate as your BHR study partner, but have since changed your mind, you can let us know by doing “My Study Partner” again at your next annual online visit.

You and your study partner can work as a team to advance brain health research. We thank you both for helping us learn even more!