Celebrating First Anniversary, Brain Health Registry on Path to Find Cures Faster for Alzheimer’s Disease and All Brain Disorders

Since its launch one year ago, in April 2014, the Brain Health Registry (BHR), led by researchers at University California San Francisco (UCSF), is on the path to find cures faster for Alzheimer’s Disease and other brain disorders by dramatically cutting the time and cost of conducting clinical trials. BHR’s successful PSA campaign with renowned model, actress and restaurateur B. Smith increased the diversity of BHR volunteers by highlighting the disproportionate participation of minorities in clinical trials.

The BHR is building a large pool of volunteers who complete free, online questionnaires and take brief, computerized cognitive tests twice a year. Data collected from the volunteers’ biannual visits helps scientists track brain functions over time and identify ideal candidates for clinical trials and research studies. BHR seeks to match volunteers across the country with clinical trials they may qualify for, saving time and money compared to traditional recruitment methods. BHR can be utilized by various investigators to help enroll for many trials at once, further reducing time and costs associated with recruitment for trials and helping to accelerate the discovery of treatments and cures.

Now celebrating its one-year anniversary, BHR has had more than 23,000 volunteers enrolled— a feat that would typically take years to accomplish using traditional recruitment methods. Nearly half of BHR members come back for biannual return visits to complete follow-up online questionnaires and retake the cognitive tests. Return visits are crucial as they allow the BHR scientists to track changes in health, lifestyle and cognitive function over time. While changes may be subtle or undetectable to the individual, multiple return visits within a year, and over years, help to better quantify change.

It’s free to sign-up, and anyone 18 and over can participate by visiting, try.brainhealthregistry.org.

Cutting costs

“The biggest obstacles to finding cures for brain disorders are the cost and time involved for patient recruitment in clinical trials,” explains Michael W. Weiner, M.D., founder and Principal Investigator of Brain Health Registry (BHR) and a professor at UCSF. “It typically costs $10,000 or more to recruit one clinical trial participant.”

Assessment of cognitive function represents a significant portion of both the completion time and expenses for conducting clinical trials. Standard administration of neuropsychological evaluations in clinical settings is resource-intense, requiring time, money, and trained personnel. Yet the BHR leverages the Internet to efficiently obtain cognitive data at lower costs. Since the inception of the Registry, BHR has collected over 20,000 online neuropsychological tests from its members.

Preliminary analysis of online neuropsychological test results suggests that they are extremely comparable to traditional administration of cognitive assessments obtained in clinics. These exciting, initial findings support the feasibility of using online neuropsychological assessments to substantially accelerate completion time and cut down costs for clinical trials.

Minority enrollment

In March, renowned model, actress and restaurateur B. Smith and her husband, Dan Gasby, partnered with BHR in a national public service campaign. The campaign aimed to increase participation of minorities in clinical trials to address the following facts:

• Although older African Americans are twice as likely to have Alzheimer’s disease as non-Hispanic whites, diagnosis and treatment are more likely to be delayed.
• Applied Clinical Trials reports African American participation in clinical trials of potential Alzheimer’s disease treatments has declined to only two percent.
• Despite an increasingly ethnically diverse US population, African Americans, Hispanics, and other minorities are under-represented in medical research. As a study published in Alzheimer Disease and Associated Disorders found, more than 95 percent of subjects in a typical Alzheimer’s disease clinical trial are white.

The underrepresentation of minorities in clinical trials means treatments may not be as effective as they could be across diverse populations. Inclusion of minorities and under-represented population is important for improving medical research.

The PSA, featured on NBC’s TODAY show and CBS Evening News, helped to raise awareness and recruited more than 8,000 new members to the BHR with 12 percent identifying as African American. (Click here to download the PSA.)

“When trials are faster, better and less expensive, investigators can test more theories and try new therapeutic approaches. The prospects for breakthrough innovation increase – and that’s what we need to find effective treatments and cures,” said Dr. Weiner. “We need to increase the number of African Americans in clinical trials if we’re going to cure Alzheimer’s. The fastest way to do that is to participate in the Brain Health Registry for free.”

For more information on the Brain Health Registry, please visit try.brainhealthregistry.org.

About Brain Health Registry

Brain Health Registry (BHR) is a groundbreaking free, online platform designed to speed the path to cures for Alzheimer’s, Parkinson's, depression, PTSD, mild cognitive impairment and other brain disorders. BHR gathers data from volunteers who have registered and completed questionnaires and cognitive tests on the BHR website. BHR aims to reduce the cost of patient recruitment for clinical trials by building a large online pool of potential candidates. The registry is led by Dr. Michael Weiner, professor of radiology and biomedical engineering, medicine, psychiatry and neurology at the University of California San Francisco (UCSF), along with other UCSF researchers and leading scientific institutions. For more information, visit try.brainhealthregistry.org.

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