SOURCE: Brain Health Registry

Brain Health Registry

December 21, 2016 10:00 ET

Brain Health Registry, World's Largest Online Longitudinal Study of Brain Health and Function, Surpasses 50,000 Members

Free Online Platform Aims to Increase Clinical Trial Participation for Brain Diseases

SAN FRANCISCO, CA--(Marketwired - December 21, 2016) - Now surpassing the 50,000 member mark, Brain Health Registry (BHR) is the world's largest online longitudinal study of brain health and function. The free platform, led by researchers at University California, San Francisco (UCSF), seeks to enroll research participants more quickly and with less cost than traditional methods. BHR has referred more than 10,000 registrants into research studies.

"We're facing a nationwide crisis in brain health, supported by the aging of our world's population," said Dr. Michael Weiner, BHR Principal Investigator and Professor of Radiology and Biomedical Engineering, Medicine, Psychiatry and Neurology at the University of California San Francisco. "We need to find treatments and cures for brain disorders as quickly as possible. BHR is a great first step since it's convenient, free, painless and easily accessible online."

Two New Studies Hold Promise

BHR is now turning its attention to two national multi-site studies. The registry not only refers candidates for study enrollments, but it also provides researches with data collected online, which helps bring down study costs while gathering supplemental data.

One study, called IDEAS (Imaging Dementia - Evidence for Amyloid Scanning), evaluates how getting a PET scan for amyloid (a protein that builds up in the brains of people with Alzheimer's disease) affects the medical outcomes of more than 18,000 people with suspected mild cognitive impairment or Alzheimer's. A recent grant from the Alzheimer's Association encourages IDEAS participants and their caregivers to join BHR and provide information about their brain health. Combining BHR and IDEAS data from this large participant group will provide important new information about the value of amyloid PET scans. It may also uncover new and non-invasive ways to identify those at risk for disease.

BHR is now also partnering with the ADNI (Alzheimer's Disease Neuroimaging Initiative), a groundbreaking public-private partnership funded by the NIA (National Institute on Aging) that identifies biomarkers needed to detect the onset and track the progress of Alzheimer's disease. BHR will help recruit new participants to ADNI. In addition, all new and returning ADNI participants and their study partners can have their brain health tracked over time using BHR. The hope is that comparing online and in-clinic information in this study will lead to better and more efficient ways to monitor brain health in future studies.

Caregiver Initiative

Brain diseases affect an entire community, not just a patient. BHR has recently added a caregiver questionnaire and is working on ways to collect more information from this at-risk population. Caregivers are more likely to experience health issues than non-caregivers. BHR is collaborating with other UCSF researchers to better understand the role of stress in aging and how the job of caregiver contributes to any decrease in overall health.

Additional Cognitive Programs

In another program, BHR is assessing data that suggests how online cognitive assessments can be used to improve the efficiency of participant recruitment in clinical trials. It is also looking at how reports of cognitive concern and Alzheimer's family history may be associated with cognitive performance across the age spectrum.

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

About Brain Health Registry

Brain Health Registry (BHR) is a free, online platform designed to speed the path to effective treatments 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 www.brainhealthregistry.org.

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