Brain Health Registry promises new treatments through faster, better clinical trials

Doctors at the Keck School of Medicine of the University of Southern California (USC) are calling on Southern Californians to join the Brain Health Registry, an Internet-based health registry, and help find cures for neurological disorders such as Alzheimer’s, Parkinson’s and depression.

Launched in San Francisco in April 2014 by the University of California, San Francisco, the Brain Health Registry promises to significantly cut the time and cost of conducting clinical trials for brain diseases. USC is the registry’s first targeted expansion outside of Northern California.

To join, individuals 18 years or older sign up for the registry online, provide a brief personal history and periodically take online neuropsychological tests in game format. By completing these online tests, participants provide snapshots of their brain function, allowing researchers to better understand the human brain as it ages and changes – quicker and at less cost. For most people, participation takes less than three hours per year.

“Recruiting participants for a clinical trial comprises a large expense, which drives up the cost of developing new drugs,” said Lon S. Schneider, MD, USC’s principal investigator for the registry and professor of psychiatry, neurology and gerontology at the Keck School of Medicine of USC and USC Davis School of Gerontology. “The registry is a safe and easy way for physician scientists to track changes in brain function of thousands of people over time and increase the pool of pre-qualified clinical trial participants. We hope this will lead to faster cures for Alzheimer’s disease, depression and other brain disorders.”

Schneider is clinical core director of USC’s Alzheimer’s Disease Research Center, a network of centers across the country supported by the National Institute on Aging to translate research into therapies for people with the debilitating disease. The center is part of Keck Medicine of USC’s Memory and Aging Center, which provides diagnostic services and treatment for age-related diseases, including Alzheimer’s, the most common form of dementia.

Brain Health Registry organizers hope to recruit 100,000 people by the end of 2017. More than 25,000 volunteers, primarily from the San Francisco Bay Area, have joined the registry so far.

A select number of volunteers will be asked by researchers to do more than take online brain tests, 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.

Leading funders for the project include the Rosenberg Alzheimer’s Project, the Ray and Dagmar Dolby Family Fund, Kevin and Connie Shanahan, General Electric and The Drew Foundation. Lumosity, the San Francisco-based brain training company, and Cogstate, a global leader in computerized cognitive assessment tools, have also partnered with the Brain Health Registry and provided online neuropsychological tests.

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by Alison Trinidad