New York Times Reports on Unprecedented Alzheimer's Study that Included Collaboration
Can we just talk? That would seem to be the critical lesson behind what may be the biggest breakthrough in awhile in Alzheimer’s research.
The New York Times recently reported that scientists and executive from nonprofit groups, universities, drug and medical-imaging industries, the Food and Drug Administration, and the National Institutes of Health actually have collaborated in an unprecedented way that has led to the identification of biological markers that indicate the progression of Alzheimer’s disease in the human brain. This collaboration has led to numerous scientific papers about the use of PET scans and tests of spinal fluids in early diagnosis of Alzheimer’s.
To get to this stage, participants had to agree to “making every single finding public immediately, available to anyone with a computer anywhere in the world,” wrote New York Times reporter Gina Kolata. “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.”
One quote by Dr. John Q. Trojanowski from the University of Pennsylvania was particularly insightful about the achievement of getting these various parties to work together. “It was unbelievable. 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,” he said.
This study’s uniqueness was immediately evident to me after writing a sharepost about a recent Newsweek article that detailed the disjointed research and development effort for drug development. In that article, authors Sharon Begley and Mary Carmichael described a system that involved five steps:
- Identifying a gene, protein or biological pathway that causes the disease.
- Testing any finding on lab animals.
- If the lab tests are safe, seeking a patent.
- Identifying a commercial partner to develop the discovery once a patent is issued.
- Further testing on larger animals and eventually people.
The New York Times story illustrated that these challenges have presented to research about Alzheimer’s. “The problem in the field was that you had many different scientists in many different universities doing their own research with their own patients and with their own methods,” Dr. Michael Weiner, who directed this collaboration which was known as the Alzheimer’s Disease Neuroimaging Initiative (ADNI), told the New York Times. “Different people using different methods on different subjects in different places were getting different results, which is not surprising. What was needed was to get everyone together and to get a common data set.”
The concept of creating ADNI emerged during a shared car ride between Dr. Neil Buckholtz, who is the chief of the Dementias of Aging Branch at the National Institute on Heath, and Dr. William Potter, an Eli Lilly neuroscientist. Buckholtz realized that NIH “could serve as an honest broker between the pharmaceutical industry and academia,” according to the New York Times article.
Kolata reported that the utilization of the Foundation for the National Institutes of Health was, an organization created by Congress to raise funds on behalf of the institutes, proved critical. Funding came from the National Institute on Aging and institutes, 20 companies and two nonprofit groups to cover start-up costs and keep the project going. Because the collaboration is “open,” information is shared so that companies and academic researchers have access. “There have been more than 3,200 downloads of the entire massive data set and almost a million downloads of the data sets containing images from brain scans,” Kolata wrote.
This story is important in helping us know that this new paradigm of research is possible. As advocates, we need to encourage more of this type of groundbreaking work and collaboration.