Earlier this month we reported on a new, exciting study which documented advancing techniques for diagnosing Alzheimer’s disease. It turns out that study is part of a new data-sharing initiative that some people are calling the future of medical research.

Up until the 2003, Alzheimer’s research had been stagnating. The traditional method of finding effective drugs was essentially trial-and-error, which is inefficient and often doesn’t improve our understanding of medicine. But no single organization could afford to conduct the sort of open-ended research that leads to real advances in a science. “Companies were caught in a prisoner’s dilemma. They all wanted to move the field forward, but no one wanted to take the risks of doing it,” said Dr. Jason Karlawish, an Alzheimer’s researcher at the University of Pennsylvania.

Wrestling with this problem in the early 2000s, Neil Buckholz of the National Institutes on the Aging and Dr. William Potter of Eli Lilly and Company hashed out a plan. What if a lot of different groups helped fund a gigantic, centralized research project and shared the results? And so the Alzheimer’s Disease Neuroimaging Initiative (ADNI) was born. The National Institutes of Health, the Food and Drug Administration, pharmaceutical companies and medical-imaging firms, universities and non-profits all contributed toward the research in which people with early- and late-stage Alzheimer’s were studied over the long-term. Seven years later, ADNI is beginning to bear fruit – like the biomarkers study from last week.

The research is what techies would call ‘open-source.’ Anyone, anywhere in the world with a computer and internet access can download the results of the study. Anyone can develop and profit from the data, but nobody can lay exclusive claim to it or try to control the results. According to Alzheimer’s researcher Dr. John Q. Trojanowski, “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.”

Already, the ADNI is serving as a precedent for future medical research, with a similar project in the works to research Parkinson’s Disease. This is the sort of news we like to bring you! Sharing stuff – not just for little kids anymore.

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