San Francisco-based online ‘brain registry’ seeks volunteers to transform research (San Jose Mercury News):
“By volunteering — repeatedly over time — participants join a pool of research subjects in the new Brain Health Registry, opened Tuesday, for studies on brain diseases such as Alzheimer’s and Parkinson’s, as well as depression, post-traumatic stress disorder and other neurological ailments.
You won’t learn your own scores; that disclosure could influence your future performance or trigger unwarranted “freak outs,” said UCSF’s Dr. Michael Weiner, founder of the registry and lead investigator of the Alzheimer’s Disease Neuroimaging Initiative, the world’s largest observational study of the disease. Rather, you will help speed up research by helping cut the time and cost of conducting clinical trials.
“Why not use the Internet as a way to enroll in trials,” he said, “where volunteers take a few minutes to take some online neuropsychological test to measure brain performance?”
Hundreds of other researchers could share this pooled and updated database of patient information — with participants’ identities removed — saving the time and expense of new recruitment with every new clinical trial.”
To Learn More:
- New Brain Health Registry HERE
- Article: Retooling Brain Care With Low-Cost, Data-Driven Technologies