My mother died in March 2010 after a 15-year battle with Alzheimer’s, so I pay particular attention to news about this dreadful disease. A recent New York Times article caught my eye: “Sharing of Data Leads to Progress on Alzheimer's.”
How did sharing data lead to progress on Alzheimer’s? A collaborative effort, the Alzheimer’s Disease Neuroimaging Initiative, was formed to find the biological markers that show the progression of Alzheimer’s disease in the human brain. The key was to share all the data, making every finding public immediately – “available to anyone with a computer anywhere in the world.”
Alzheimer’s research is an enormous task with limited returns. Dr. Michael W. Weiner of the San Francisco Department of Veterans Affairs said “Different people using different methods on different subjects in different places were getting different results, which is not surprising. What was needed was to get everyone together and to get a common data set.” Numerous entities were willing to shoulder the burden and work together on the project, sharing their information for the good of all.
According to Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania, “It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.” The National institutes of Health served as an “honest broker, between the pharmaceutical industry and academia.”