What was that word you used?
My Mother always taught us to share, care and respectfully work together. She said that there is strength in number.
Seems that this is true in medical research as well. Yes, in the land where no one shared data unless they were close trusted collegues. Sometimes necessity and the overwhelming enormity of the project creates the perfect opportunity to do as mother taught us so many years ago.
Trying to solve Alzheimer’s Disease, the idea for the collaboration, known as ADNI, for Alzheimer’s Disease Neuroimaging Initiative, emerged about 10 years ago during a casual conversation in a car between life time friends on the way to the airport.
Neil S. Buckholtz, chief of the Dementias of Aging Branch at the National Institute on Aging, was being driven to the airport by his lifelong friend, Dr. William Potter, a neuroscientist at Eli Lilly.
Dr. Potter had recently left the National Institutes of Health and he had been thinking about how to make progress in the Alzheimer’s drug research. Research was run in a dark age’s fashion
“… give a drug and hope it does something,” …“What was needed was to find some way of seeing what was happening in the brain as Alzheimer’s progressed and asking if experimental drugs could alter that progression.”
Then he had a crazy idea -what if we create a world collaboration effort?
The key to the Alzheimer’s project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world.
No one around the world would own the data.
No one could submit patent applications,
though private companies would ultimately profit from any drugs or imaging tests developed
The project would require 800 subjects, some with normal memories, some with memory impairment, some with Alzheimer’s, who would be tested for possible biomarkers and followed for years to see whether these markers signaled the disease’s progression.
The development of reliable and valid measures of Alzheimer’s disease requires such large science with such limited returns on the investment that it was in no one company’s interest to pursue it.
Companies as well as academic researchers are using the data. There have been more than 3,200 downloads of the entire massive data set and almost a million downloads of the data sets containing images from brain scans.
And Dr. Buckholtz says he is pleasantly surprised by the way things are turning out.
“We weren’t sure, frankly, how it would work out having data available to everyone,” he said. “But we felt that the good that could come out of it was overwhelming. And that’s what’s happened.”
Excerpts courtesy of http://nyti.ms/crVMcn