Celebrating the Brain Health Registry’s 9th Anniversary
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April 2023 marks the ninth year since the Brain Health Registry (BHR’s) launch in 2014. To celebrate this occasion, we’d like to share some study updates and accomplishments. These are discussed in detail in our newly published paper.
BHR has pioneered several initiatives to increase the inclusion and engagement of participants from historically under-included groups. These groups include the Asian, Black, and Latino communities, as well as those with less than a college degree, those with lower wealth, and those with cognitive impairment.
BHR aims to accelerate the search for treatments for brain diseases that can benefit all communities. To do this, we need our participants to be representative of the broader population, and to include people from all walks of life.
This year, we are beginning additional efforts to make BHR more inclusive of participants from different backgrounds. More information to come in future newsletters!
Through projects like the GenePool Study and the Biomarker Prediction Study, BHR has obtained blood plasma and genetic material from many participants. DNA and plasma biomarkers can provide insight into a person’s risk for developing Alzheimer’s disease and other forms of dementia.
This biomarker data can inform strategies for efficiently identifying older adults at risk for cognitive impairment and dementia on a large scale.
Launched in 2018, the BHR Caregiver and Study Partner Portal allows participants to invite a person who knows them well, like a spouse or friend, to provide insight into changes in the participant’s health and functioning over time. There are now around 11,500 study partners enrolled!
BHR By The Numbers
More than 100,000 participants are enrolled in BHR, including study partners. About half of BHR participants have a self-reported memory concern, 61% of participants have a college degree or higher, and nearly three quarters identify as female. About 79% of participants identify as White, and 13% as Latino.
BHR has sent over 259,000 invitations to participants to join other research studies. These studies are often led by BHR scientists and collaborators at other research institutions. Some of these projects include a smartphone app project called the Mobile Toolbox Study, as well as the Hoarding Behaviors Study.
BHR Task Completion
A key focus moving forward is making your participation in BHR over time easier and more enjoyable.
We recently redesigned our website to make your experience smoother and more streamlined. We hope this will encourage you to return to the website every six months to complete follow-up study tasks, which provides important information about how brain health changes over time.
Of course, we could not have come all this way without the support and dedication of all of you — our participants and study partners. From the entire BHR team, we want to sincerely thank you for your contributions!