Sharing of Data Leads to Progress on Alzheimer’s Disease

Boston Elder Law AttorneysSpecializing in Medicaid Planning

Cohen & Oalican, LLC

617-263-1035- Boston508-821-5599 – Raynham978-749-0008 - Andover

Sharing of Data Leads to Progress on Alzheimer’s Disease

• Cohen & Oalican, LLP share recent Alzheimer's research.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• A project was initiated in the year 2003 when the National Institutes of Health, the Food and Drug Administration, the drug and medical-imaging industries, universities and nonprofit groups joined hands in a joint endeavor to find the biomarkers that reveal the progress and evolution of Alzheimer’s disease in the human brain.

• It was a unique project in the annals of medical research and it is yielding results now, which are evident in a deluge of research papers on the subject.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• Early diagnosis of Alzheimer’s is being done with PET scans and spinal fluid analysis and more than 100 drug studies are in progress to find formulations that might slow down or even cure the disease.

• This remarkable collaborative effort is showing the way for more such projects and a similar one has begun for Parkinson’s disease.

• The Michael J. Fox Foundation has sponsored a $40 million study to find the biological markers for Parkinson’s disease that will enlist 600 subjects in Europe and the USA.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• The project has generated great excitement among the research fraternity as the agreement to share all data and make all findings public was something unheard of in the scientific world. Anybody with a computer anywhere can access all the data and go through the findings of all the research studies on the subject. The objective was not just to raise funds, or do research but share all the facts and figures and everything going on in the project on a global scale.

• There would be no ownership or patent of the data or the research finding and everything would be in the public domain. Private pharmaceutical companies would of course benefit in the long run from the drug formulations or imaging tests that were being developed during the project.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania is stunned by the amazing scope of the project. It is a project that is unique and path-breaking in scientific research, according to him. But it is the only way to do it, as unless we kept aside our egos and intellectual property issues, the task of finding the biomarkers for these diseases would be an impossible one, he says. It does not mean that a person having the biomarkers would definitely get the disease, but that is also part of the project. The study aims to find those biomarkers that herald the onset of the degenerative disease.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• The Alzheimer ’s disease Neuro-imaging Initiative or ADNI came about during a normal conversation about 10 years ago. Neil S. Buckholtz, chief of the Dementias of Aging Branch at the National Institute on Aging was being driven to the airport in Indianapolis by Dr. William Potter who was himself a neuroscientist at Eli Lilly. Dr. Potter was seriously thinking about the ways to hasten the progress of the drug research on Alzheimer’s.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• He wanted to come out of the typical drug development syndrome of the 19th century, where a drug was administered and then everyone waited around for it to work. He felt that there must be some other method, where one could view the brain as Alzheimer’s developed and then formulate drugs to halt that development. There were efforts to locate biomarkers, but there was not much progress as different scientists in many different parts of the world were doing their own studies in their universities and with their own patients. They were obviously coming up with different results due to this.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• 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.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• 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.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• 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.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• 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.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• 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.

Sharing of Data Leads to Progress on Alzheimer’s Disease

• 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.

If you have any further questions please contact, Cohen & Oalican LLP, elderlaw attorneys in Boston,

Andover and Raynham

Boston Elderlaw AttorneysSpecializing in Medicaid Planning

Cohen & Oalican, LLC

617-263-1035- Boston508-821-5599 – Raynham978-749-0008 - Andover