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UCSF launches groundbreaking online registry to drive brain disease research
Date:4/8/2014

al tests in an online game format. The games give the Brain Health Registry scientific team a snapshot of the participant's brain function. The data collected will help scientists study brains as they age, identify markers for diseases, develop better diagnostic tools to stop disease before it develops and increase the ready pool of pre-qualified clinical trial participants.

A select number of volunteers will be asked by researchers to do more, such as providing saliva or blood samples, or participating in clinical trials to test potential cures. Volunteers can participate as little or as much as they like. All information will be gathered in accordance with federal privacy laws under the Health Insurance Portability and Accountability Act (HIPAA), as well as the highest standards of medical ethics.

"For those of us who know people suffering from Parkinson's, Alzheimer's, PTSD and other brain disorders, this is a way we can be involved in the search for a cure," said Douglas Rosenberg, of the Rosenberg Alzheimer's Project, which is helping to fund the project. "We've worked to make the process very easy and very fulfilling for our volunteers."

Recruiting costs are a large part of the expense of conducting clinical trials, which, in turn, help drive up the cost of developing new drugs. Early stage trials, which focus on safety and preliminary efficacy, can cost tens of millions of dollars. Late stage trials, which involve hundreds, if not thousands, of people and focus on efficacy, can cost hundreds of millions. Trials at both stages can drag on for years, largely because recruitment is such a big challenge.

"Dr. Weiner is putting together a Bay Area 'ready for trials' group that will bring more patients forward for therapies," said Bruce Miller, the A.W. and Mary Margaret Clausen Distinguished Professor in Neurology at UCSF and director of the Memory and Aging Center. "A central registry could speed this process up dramatically a
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Contact: Laura Kurtzman
laura.kurtzman@ucsf.edu
415-502-6397
University of California - San Francisco
Source:Eurekalert

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