Weiner: The initial goal of ADNI, when it was first started, was to standardize the use of biomarkers for clinical trials of Alzheimer's disease and create a database, a repository of information that could be used to help the pharmaceutical industry and the National Institute of Health develop treatment trials for Alzheimer's disease that use biomarkers. The beauty of the ADNI project is that it's a large sample and everybody's getting lots of different measurements.
Narrator: Over 60 sites are involved with the project, including six University of California campuses. At UC Berkeley, Dr. William Jagust heads the initiative's research on positron emission tomography, or PET, imaging.
Jagust: We've begun to use a technology with PET scanning to image a protein in the brain called beta amyloid and we can see it with PET scanning, and we've done a number of studies where we're using this technology in people who have cognitive loss and dementia, and we're finding that this may be a very useful way to diagnose the cause of dementia during life. We're still in the process of working on these studies, but we think that this is going to provide very useful information for the diagnosis of dementia. Most important, is we can follow them over time and see what happens to them and see if their cognitive function starts to decline or if they are developing problems.
Narrator: Susan Landau, a research scientist who works in Jagust's lab, led a large study that found patients with mild cognitive impairment who had low glucose metabolism in certain regions of the brain, as identified by PET scans, were 15 times more likely to develop Alzheimer's disease within a two-year period.
Landau: It looks like, as different parts of the brain show deterioration, as neural degeneration develops, glucose metabolism - or how well the brain is working, how efficiently the brain is working - that declines. So, it's a somewhat global measure of how well the brain is doing, how the brain is using energy to function. So, where we'd like to go is start moving earlier and earlier in the disease spectrum and hopefully target people who haven't experienced any decline and target them for potential participation in clinical trials and more research.
Jagust: One of the things we've learned is that these biomarkers, these different kinds of biomarkers, change at different rates at different times of the disease. And one of the things we're trying to sort out now in the data we have, is exactly which biomarker is best at which stage of the disease.
Narrator: ADNI's data has become a treasure trove of information for the scientific community.
Weiner: All the clinical data from the patients, the images, the MRIs, the PET scans, the blood tests, the neuropsychological tests, the genetic tests - all of that goes into what we call a database, it's all digital on computers. And what we've done is we decided to release that data without any embargo. Most scientists keep their data in their own computers, locked up in their laboratories and it never sees that light of day. And I think that's too bad. I think that now that we have the Internet and we see what Google has done and search engines, the time has come for the entire scientific community to shift its approach, and we need to get this raw data available to everybody so it can be searched and mined and used. And the economic benefits would be huge because companies could benefit and the benefits to humanity would be great because it would foster more exchange of information. So, basically there are many advantages to having release of raw scientific data and almost no disadvantages.