One of the tenets of the Human Connectome Project is that the data we collect can only begin to be understood during the 5-year lifecycle of our initial grant. Indeed, the data we collect will be made public, to facilitate many future studies by scientists all over the globe. This is a fundamental part of the project charter as defined by the NIH.
As this article by Gina Kolata in the New York Times tells us, it’s a highly successful model for research in the new, networked world of science.
In 2003, a group of scientists and executives from the National Institutes of Health, the Food and Drug Administration, the drug and medical-imaging industries, universities and nonprofit groups joined in a project that experts say had no precedent: a collaborative effort to find the biological markers that show the progression of Alzheimer’s disease in the human brain.
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.
The article in full tells how the Alzheimer’s Disease Neuroimaging Initiative (ADNI) came to be, and how its unusual (in the academic research community) “open-source” model of data sharing has helped drive fruitful results much faster than might have been expected.
As a noteworthy aside, the data repository for the ADNI is provided by the Laboratory of Neuro Imaging (LONI) at UCLA, who are also working under the NIH’s Blueprint for Neuroscience Research, collaborating with Massachusets General Hospital to build and refine a next-generation 3T MR scanner.
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The participant data from our research into the Human Connectome that is stored in our XNAT server is de-identified, and contains no personal health information (PHI).
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