11 Years Strong: A Journey of Milestones and Remarkable Achievements!
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The Brain Health Registry turns 11 this month and we’re very proud of what we’ve been able to accomplish with you and over 100,000 amazing volunteers like you. Since we began inviting our participants to additional research studies in 2015, we have sent over 489,000 invitations. Over 42,000 participants have enrolled in at least one other study.
Here are some highlights of Brain Health Registry accomplishments in the past year:
GenePool Study
The GenePool Study investigates the advantages and challenges of collecting genetic information from older adults by mailing saliva kits to their homes. This approach is less burdensome for participants compared to in-clinic visits. In 2024, the GenePool Study enrolled over 4,000 participants. We are now studying the effectiveness of varying recruitment messaging to motivate participants to join.
Study Partners
Every Brain Health Registry participant can invite a study partner to join. A study partner is someone who knows you well and answer questions about recent changes in your memory and thinking that they have observed. Over 11,000 study partners have enrolled since 2016! This year we’ve made it easier to join as a study partner. Study partners can now enroll directly into the Brain Health Registry, without an invitation. The next time you login to your account, check for an invitation and instructions for how to become a study partner.
In addition, the BHR platform powers other online studies being led by our team and our amazing collaborators. These include:
Biomarker Evaluation in Young Onset Dementia (BEYONDD)
The BEYONDD study is validating more accessible and convenient methods to identify early onset dementia in adults ages 40-64 from different backgrounds across the US and Puerto Rico. BEYONDD recruits adults that have noticed recent changes in their thinking, language or behavior. Participation involves taking online questionnaires, quick tests of thinking and memory, an at-home blood draw, and an optional visit at a clinical site. To learn more about the study click here.
Blood Analysis with Neuropathological Knowledge of CTE (BANK CTE)
The BANK CTE study investigates whether we can detect chronic traumatic encephalopathy, more commonly called CTE, through a blood draw. CTE is a brain disease linked to repeated trauma to the head. This study is performing large-scale blood banking of people at risk for CTE and who agree to brain donation. To learn more click here.
Community Engaged Digital Alzheimer’s Research (CEDAR)
The CEDAR study develops and evaluates new methods to recruit, enroll, engage, and encourage participation over time to in Brain Health Registry and other studies. The study also collects new information about many different factors that influence one’s health. So far, CEDAR has enrolled over 1,000 participants!
Head Impact and Trauma Surveillance Study (HITSS)
HITSS is an online registry for athletes who have played contact sports such as football or soccer. The study investigates risks and protective factors that could affect these athletes’ chances of developing mild cognitive impairment, Alzheimer’s disease, other dementias, and related behavioral and psychological symptoms. So far, HITSS has enrolled over 18,000 participants. To learn more about HITSS, click here.
Mobile ToolBox Study
The Mobile ToolBox study is developing and testing new memory and thinking tests that are completed on a smartphone app. Over 1,000 Brain Health Registry participants have joined. This year focused on using the new tests to track changes in brain health over time.
Our deep gratitude to all Brain Health Registry participants
We would like to express our deep gratitude to all Brain Health Registry participants. You have been essential in driving this research forward. Your participation has led to advances in many areas, ranging from Alzheimer’s related biomarkers to development of new memory tests. We appreciate all your contributions and look forward to continuing this work together in the years ahead!
