http://www.sfgate.co...ect-5384362.php
Brain Health Registry aims to build test subject pool
Victoria Colliver
Updated 8:58 am, Tuesday, April 8, 2014
UCSF officials hope to solve one of the biggest hurdles to clinical research for Alzheimer's, Parkinson's and other brain diseases: finding people willing to be subjects in trials in a relatively short time.
With the Brain Health Registry, an online project to be announced Tuesday, researchers hope to recruit as many as 100,000 people over the next three years to serve as a ready-made pool of participants for studies in a wide range of neurological diseases as well as depression, post-traumatic stress disorder and other brain-related ailments.
Alzheimer's, a progressive, fatal brain disease, is the sixth-leading cause of death in the U.S. and affects 1 in 8 older Americans. One in 3 adults will suffer from a brain disease or injury in his or her lifetime.
"There's a widespread problem in neurology and psychiatry to get people enrolled in studies," said Dr. Michael Weiner, UCSF professor of radiology, biomedical engineering, psychiatry and neurology. "We want this website to be used by all kinds of neuroscience and academic people and companies that have products that could help people with brain disorders."
Recruitment for the registry initially will focus on Bay Area residents, and researchers hope to sign up as many people as possible to test promising therapies or serve as "control" group members.
Anyone older than 18, with or without a family history of brain disease or other neurological risk factors, can sign up. Volunteers can participate as much or as little as they'd like, and all their health information is protected by federal law.
About a third of the cost of running clinical trials comes from the effort to recruit patients, and many trials are delayed or never happen because scientists can't find enough patients or don't have enough money to complete their research, Weiner said.
All clinical trials have a tough time finding recruits, but the problem is particularly acute for neurological diseases. Brain conditions tend to develop very slowly - over decades, rather than months or years, and the diseases are complex. This makes research and the lengthy process of following trial participants time consuming, expensive and difficult to do.
While promising discoveries have been made for some neurological diseases, effective treatments for Alzheimer's and many other brain diseases have not been found.
"The single biggest reason why we don't have effective treatments for Alzheimer's is simply money," said Weiner, principal investigator of the Alzheimer's Disease Neuroimaging Initiative, a $140 million project funded by the National Institutes of Health that is considered the world's largest observational study for the disease.
By establishing the registry, the money saved in recruitment would be funneled to research, he said.
To participate, volunteers will need to go on the Brain Health Registry's website, fill out a brief personal history and take some neuropsychological tests in an online game format. One of the games, for example, tests participants' memory using a virtual deck of cards.
Completing the process prequalifies participants for trials, but some volunteers may be asked to do more if they are willing, such as provide blood or saliva samples and participate in brain-imaging scans.
Already, about 2,000 people have signed up for the registry since January as part of its beta testing phase.
One of them was Douglas Rosenberg, a former San Francisco real estate developer who is helping to fund the registry through his own initiative, the Rosenberg Alzheimer's Project. Rosenberg started his project, which is investing about $10 million in research efforts, after seeing his father, stepmother and his mother's husband develop and eventually die from Alzheimer's.
"You see it once, it's overwhelming. If you see it twice, it's excruciating. If you see it three times, maybe you can begin to understand the passion I feel for what I am doing," said Rosenberg, 56. "Do I walk around in mortal fear of getting the disease? It doesn't control my life, but I have to think about it."
Rosenberg acknowledged it may be frightening for some people to think about brain diseases, let alone go through a series of tests and offer themselves up for potential research.
But Karen McCabe of San Francisco didn't have second thoughts about going through the process.
McCabe, who is in her 50s, does not have a family history of brain diseases, but she said she has seen friends and extended family members grapple with these issues as they care for aging parents.
"It used to be you had to go to a lab to do this kind of thing," said McCabe, as she took a break from signing up for the registry after completing a memory game she described as fun, but a little challenging. "To sit right here and help research, it brings tears to my eyes."
To sign up as a volunteer in the Brain Health Registry, go to www.brainhealthregistry.org.
