Collaboration on Alzheimer's a Success

NEW YORK, Aug. 13 (UPI) — An unprecedented and ambitious sharing of data on Alzheimer’s disease has led to advances in diagnosis and treatment, health experts say.

It is the end result of an effort begun in 2003 by scientists and executives from the National Institutes of Health, the Food and Drug Administration, the drug and medical-imaging industries, universities and non-profit groups, The New York Times reported Friday.


The goal was to find and identify the biological markers that reveal the progression of the disease in the human brain.

The key to the project was an agreement to share all the data so anyone with a computer anywhere in the world would have full and immediate access to the findings, the newspaper said.

Under the agreement 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,” Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania, said. “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.”

One of the project’s leaders says he’s delighted with the result.

“We weren’t sure, frankly, how it would work out having data available to everyone,” Neil S. Buckholtz of the National Institute on Aging said. “But we felt that the good that could come out of it was overwhelming. And that’s what’s happened.”

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