UCSF launches groundbreaking online registry to drive brain disease research

April 8, 2014

A new online project led by researchers at UC San Francisco promises to dramatically cut the time and cost of conducting clinical trials for brain diseases, while also helping scientists analyze and track the brain functions of thousands of volunteers over time.

With easy online registration, the Brain Health Registry is designed to create a ready pool of research subjects for studies on neurological diseases, such as Alzheimer's and Parkinson's, as well as depression, and many other brain ailments. About one third of the cost of running a clinical trial comes from having to recruit patients, and many trials fail or are delayed because of it.

The Brain Health Registry is the first neuroscience project to use the Internet on such a scale to advance clinical research, according to Michael Weiner, MD, founder and principal investigator of the initiative and a professor of radiology, biomedical engineering, medicine, psychiatry and neurology at UCSF. One of his roles is serving as principal investigator of the Alzheimer's Disease Neuroimaging Initiative, the largest observational study of Alzheimer's.

"This registry is an innovative 21st century approach to science with tremendous potential," Weiner said. "The greatest obstacles to finding a cure for Alzheimer's and other are the cost and time involved in . This project aims to cut both and greatly accelerate the search for cures."

Leading funders for the project include the Rosenberg Alzheimer's Project, the Ray and Dagmar Dolby Family Fund and Kevin and Connie Shanahan. The initial focus will be on the San Francisco Bay Area, and the goal is to recruit 100,000 people by the end of 2017. Nearly 2,000 people already signed up during the online Registry's beta phase.

Volunteers will provide a brief personal history and take online neuropsychological 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 and save a lot of money."

The Brain Health Registry has partnered with Lumosity, the San Francisco-based brain training and neuroscience research company. Lumosity is helping recruit members for the Brain Health Registry and has also provided a battery of online assessments as part of the brain performance tests. The Brain Health Registry is also collaborating with healthcare and product leader Johnson & Johnson Innovation and Cogstate, the Australian company known for its computer-based cognitive assessment tools.

"The Brain Health Registry is aligned with our research goals and has the potential to transform clinical trial recruitment for brain conditions and open up new opportunities for research, said Michael Scanlon, Chief Scientific Officer of Lumosity. "We are excited to partner with UCSF and the Brain Health Registry to advance neuroscience research and gain a better understanding of the human brain."

Explore further: Can a virtual brain replace lab rats?

Related Stories

Can a virtual brain replace lab rats?

February 14, 2014
Testing the effects of drugs on a simulated brain could lead to breakthrough treatments for neurological disorders such as Parkinson's, Huntington's and Alzheimer's disease.

New research suggests connection between white matter and cognitive health

April 7, 2014
A multidisciplinary group of scientists from the Sanders-Brown Center on Aging at the University of Kentucky have identified an interesting connection between the health of the brain tissue that supports cognitive functioning ...

Scientists catch brain damage in the act (w/ video)

March 13, 2014
Scientists have uncovered how inflammation and lack of oxygen conspire to cause brain damage in conditions such as stroke and Alzheimer's disease.

Interactive software helps veterans suffering from PTSD

July 4, 2013
Digital tools can be an easily accessible and effective way of treating veterans who suffer from brain injuries and post-traumatic stress.

Native plum likely new weapon against Alzheimer's

March 11, 2014
West Australian researchers are confident the native Australian fruit Kakadu plum could provide the most powerful antioxidant treatment yet in combating Alzheimer's disease.

Neuropsychological assessment more efficient than MRI for tracking disease progression

February 18, 2014
Investigators at the University of Amsterdam, The Netherlands, have shown that progression of disease in memory clinic patients can be tracked efficiently with 45 minutes of neuropsychological testing. MRI measures of brain ...

Recommended for you

The neural codes for body movements

July 21, 2017
A small patch of neurons in the brain can encode the movements of many body parts, according to researchers in the laboratory of Caltech's Richard Andersen, James G. Boswell Professor of Neuroscience, Tianqiao and Chrissy ...

Faulty support cells disrupt communication in brains of people with schizophrenia

July 20, 2017
New research has identified the culprit behind the wiring problems in the brains of people with schizophrenia. When researchers transplanted human brain cells generated from individuals diagnosed with childhood-onset schizophrenia ...

Scientists reveal how patterns of brain activity direct specific body movements

July 20, 2017
New research by Columbia scientists offers fresh insight into how the brain tells the body to move, from simple behaviors like walking, to trained movements that may take years to master. The discovery in mice advances knowledge ...

Scientists discover combined sensory map for heat, humidity in fly brain

July 20, 2017
Northwestern University neuroscientists now can visualize how fruit flies sense and process humidity and temperature together through a "sensory map" within their brains, according to new research.

Team traces masculinization in mice to estrogen receptor in inhibitory neurons

July 20, 2017
Researchers at Cold Spring Harbor Laboratory (CSHL) have opened a black box in the brain whose contents explain one of the remarkable yet mysterious facts of life.

Speech language therapy delivered through the Internet leads to similar improvements as in-person treatment

July 20, 2017
Telerehabilitation helps healthcare professionals reach more patients in need, but some worry it doesn't offer the same quality of care as in-person treatment. This isn't the case, according to recent research by Baycrest.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.