For more than three decades, Dr. Michael Weiner, a researcher a UC San Francisco, has been studying brain health. For much of that time, he has been trying to understand Alzheimer’s disease.
But even as the principal researcher on a $140 million Alzheimer’s study — the largest grant-funded study of the disease — Weiner said the No. 1 thing preventing scientists from finding more cures is cost.
His solution is the Brain Health Registry, an online, open-door clearinghouse for brain health researchers. The registry, which officially launches today at www.brainhealthregistry.org, is a voluntary website where potential research participants go through a 20-minute questionnaire and brain health test in order to create a “pool of prequalified recruits.”
As it stands, clinical researchers studying any number of diseases spend a huge chunk of money on finding, interviewing and screening patients. Not only is it costly, said Weiner, but it’s also time consuming.
“If we had more money or lowered the cost we could come to cures more rapidly,” he said. “So it occurred to me, why not use [the] Internet to screen people with questionnaires?”
Open to anyone over 18, the registry will give brain researchers around the world a growing pool of people whom they can tap for studies on everything from depression and Parkinson’s disease to traumatic brain injury and post-traumatic stress disorder.
And it couldn’t have come at a better time, Weiner said, as people are living longer and brain disorders are becoming more common. Thus, the need for cures is greater and greater.
“We think it’s revolutionary; we think it’s paradigm-shifting,” Weiner said of the registry.
The doctor came up with the idea about two years ago when he realized that “memory testing and other … brain function testing can be done with computers,” as can the kinds of questionnaires used for screening people. That’s when he started focusing on a Web-based model.
Originally only geared toward Alzheimer’s research, Weiner soon realized its potential for all brain disorders.
Two years, a website and $1 million later, the only thing that might put a dent in Weiner’s enthusiasm is recruiting patients. Without large numbers of people participating, it will not give researchers a large enough pool to reduce costs.
“The main hook is … for people to help medical research and society,” Weiner said. “All we’re asking people to do is donate maybe 20 minutes twice a year and go to a website.”
So far, in the prelaunch period, the registry has gathered a small number of participants — 2,000 — but project leaders hope today’s official announcement of the program and outreach through Lumosity and Cogstate, both of which helped create the registry, will make a big difference.
In addition to Cogstate and Lumosity, a San Francisco-based brain training and neuroscience research company, the registry has also partnered with Johnson & Johnson.
Among the first participants was Jackie Boberg of Saratoga, who said she was drawn to be a part of the registry because she wanted to help. She saw the pain of friends and family whose loved ones suffered from Alzheimer’s.
“I like the concept, which is a database that any research organization can tap in to,” Boberg said. “That really got me interested. I liked that. It feels egalitarian.”
1 in 3: Number of adults who will suffer from brain disease or injury during their lifetime
Every minute: Rate at which someone dies from such diseases and injuries
1 million: Number of Americans with Parkinson’s disease
5.2 million: Number of Americans who suffer from post-traumatic-stress disorder every year
1.7 million: Number of Americans who suffer from traumatic brain injuries annually