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Open Data Starts Paying Off on Alzheimer’s

BY Nancy Scola | Friday, August 13 2010

A leap started seven years ago towards getting all wiki-fied, open, and share-happy with brain data by researchers inside and outside government is starting to justify itself, reports the New York Times' Gina Kolata. Researchers with National Institutes of Health, FDA, and industry decided about to change tactics on Alzheimer’s research by upping their collaboration and trying to control the reflex of patenting everything moves. The results, reports Kolata, is a wealth of new, and useful, knowledge:

Now, the effort is bearing fruit with a wealth of recent scientific papers on the early diagnosis of Alzheimer’s using methods like PET scans and tests of spinal fluid. More than 100 studies are under way to test drugs that might slow or stop the disease. ...

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 would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort.

“It was unbelievable,” said 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.”

Of course, opening up the data driving (potentially lucrative) scientific research was nervous-making for some. "We weren’t sure, frankly, how it would work out having data available to everyone, " a National Institute on Aging scientist says in the piece. "But we felt that the good that could come out of it was overwhelming. And that’s what’s happened." More on the project here.