Sharing of Data Leads to Progress on Alzheimer’s Disease–Part 2

The need was for all researchers and experts to come together to work and evolve a standard data set. But how was this possible? It would entail an incredible collaboration as no one company or researcher could manage to do this alone. The project would involve 800 subjects with varying degrees of memory impairment; some normal, some with a little impairment, some with Alzheimer’s and all had to be tested for the biomarkers and then followed up for several years to judge whether the markers heralded the progression of the degenerative disease. It did seem an impossible project and one that was way beyond anybody’s implementation.

But in the car, Dr. Potter had an intuitive flash when he felt that this project due to its seriousness of objective and aim of ending untold suffering may well propel people to work together in a way that had never been attempted before. The concept was to make the National Institutes of Health the go-between or broker between the world of academia and the pharmaceutical industry. Very soon afterward the director of the National Institute on Aging Dr. Richard J. Hodes talked about this to the former scientific director at the National Institute of Mental Health, Dr. Steven M. Paul and the latter agreed to consult the drug companies to find ways of getting funding for the research. Soon it became clear that all these companies were ready to assist as the development of diagnostic methods was a gigantic task that no one could manage on their own. Collaboration was the need of the hour. Congress established the Foundation for the National Institutes of Health to find ways and means to garner private funds for the institutes. Dr. Steven M. Paul was appointed to the board of the foundation.

Ultimately, $ 41 million was given by the National Institute on Aging, $2.4 million was contributed by some other institutes, 2 non-profit associations and 20 organizations together managed $27 million and this became the initial seed money to get the project started and keep it going for the first 6 years. The National Institute of Aging advanced another $24 million last year and on the basis of further federal and private funding the foundation made plans for the project to continue for another 5 years.

In the beginning, the unique parameters of the project had many scientists worried as they wondered whether giving up ownership and sharing valuable data with all and sundry would result in anything positive at all. There could be misinterpretation, misuse and wrong information being disseminated that could do more harm than good. But despite the misgivings, all realized that there was no alternative to this collaborative endeavor. Even the drug companies, who were usually looked upon with suspicion, were roped in and everyone had to overcome this mental block, according to Dr. John Karlawash an Alzheimer’s researcher at the University of Pennsylvania.

Dr. Karlawash stresses the need to combine resources and work together. The need to find these valid biomarkers for Alzheimer’s was urgent and the entire process demanded such huge funding and massive research that it was impossible for any one company or academic institution to even think of embarking on the project. It had to be a collaborative exercise and now all concerned are making use of the data. The huge data set has been downloaded at least 3200 times and the data sets comprising images of brain scans have been downloaded almost a million times.

The positive outcome of the project has delighted Dr. Buckholtz who says that he is quite “pleasantly surprised” by the way it has turned out. No one was sure how this innovative concept of sharing everything in the public domain in a research project would evolve, but they were confident that ultimately there would be some good coming out of the hard work and combined research. That is how it has turned out to be and it has kindled new hope for the conquest of these diseases.

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