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April 2021

This April, we are celebrating the seven-year anniversary of the Brain Health Registry.

We’ve come a long way since we began BHR in 2014. We ended our first year with just over 10,000 participants enrolled in our study. Now, we have surpassed 80,000!

We’d like to take a moment to reflect on BHR’s accomplishments, and to discuss what the future holds.

From the Clinic to the Internet

 

The time and cost of conducting clinical trials are major barriers to the development of therapies for Alzheimer’s and other diseases. Recruiting and screening large numbers of participants to determine their eligibility for a study can be especially resource intensive.

To combat this issue, BHR has amassed a community of volunteers who are monitored over time via questionnaires and brain tests. By referring eligible volunteers to different studies, we have reduced the resources necessary for other researchers to reach their recruitment goals. We have collaborated with researchers across the United States and internationally to accelerate the search for treatments for brain diseases like Alzheimer’s and Parkinson’s.

In fact, over the past seven years, we have referred and enrolled over 5,000 BHR participants in clinical studies!

Brain Health Registry Newsletter – April 2021, UCSF Brain Health RegistryThroughout the Covid-19 pandemic, when many research studies have gone on pause, online studies like BHR have thrived. In turn, many researchers have re-designed their studies to accommodate pandemic restrictions. The success of BHR’s model demonstrates the feasibility of online data collection, and has helped shift research beyond traditional clinical settings.

Over the past few years, BHR researchers have shown that several cognitive assessments typically conducted in clinical settings can be self-administered over the internet. Online testing reduces the burden of scheduling appointments, bringing participants into clinics, and training research staff to administer the assessments in-person. Plus, participants can do all their testing from the comfort of home, which we hope reduces test anxiety, and makes participation even easier and enjoyable!

Thank You to All Our Participants!

 

Of course, we could not have accomplished all that we have throughout the past seven years without the help and dedication of all of you. We appreciate all the time and hard work you have put into this research. Even if it has been a while since you’ve last logged into our site, it’s never too late to answer follow-up questionnaires and take brain tests.

Brain Health Registry Newsletter – April 2021, UCSF Brain Health RegistryWe have exciting, new research projects coming up in 2021:

  • Initiatives to recruit underrepresented populations into clinical research, and to better understand barriers to enrollment specific to different groups. We hope that by engaging diverse communities in BHR, we can improve how other researchers conduct their studies, and ensure that research results apply to everyone.
  • A collaboration with researchers at Boston University, exploring the relationship between head injuries and cognition.
  • A new study exploring the use of smartphone app-based cognitive assessments.

Stay tuned for more upcoming information on these initiatives and a chance to participate.

Thank you again for your involvement in the Brain Health Registry. We love hearing from our participants, so please don’t hesitate to get in touch with our study team with questions or comments.

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