Alzheimer's Disease Neuroimaging Initiative
The Alzheimer's Disease Neuroimaging Initiative (ADNI) is a collaborative effort by multiple research groups to find the biological markers that show the progression of Alzheimer’s disease in the human brain. The project enlists scientists and executives from the National Institutes of Health, the Food and Drug Administration, drug and medical-imaging companies, universities and nonprofit groups.
The initiative's defining characteristic is the commitment by all groups to publish and relinquish ownership of their data and findings as soon as possible, i.e., without waiting for the completion of their research. Collaborators also agreed to forgo any patent opportunities. The current focus is to measure the levels of certain proteins in the cerebrospinal fluid of people who may have Alzheimer’s or may go on to develop it.
On June 11, 2010, the initiative publicized the profiles of 4,000 patients from 11 trials.
Companies, governments and academic researchers have combined to acquire more than 3,200 downloads of the entire data set and almost a million downloads of the data sets containing brain scan images.
The idea for the collaboration, emerged about 10 years ago during a casual conversation between Neil S. Buckholtz, chief of the Dementias of Aging Branch at the National Institute on Aging (NIA), Dr. William Potter, a neuroscientist at Eli Lilly and Company “We wanted to get out of what I called 19th-century drug development — give a drug and hope it does something,” Dr. Potter recalled in an interview on Thursday. “What was needed was to find some way of seeing what was happening in the brain as Alzheimer’s progressed and asking if experimental drugs could alter that progression.”
In conversation with NIA director Dr. Richard J. Hodes, Dr. Steven M. Paul, a former scientific director at the National Institute of Mental Health who had recently left to head central-nervous-system research at Eli Lilly, offered to ask other drug companies to raise money. Dr. Paul was on the board of the Foundation for the National Institutes of Health, which raises private funds on behalf of the institutes and aided the effort. The collaboration officially began in 2003.
Prior to the collaboration, no individual project had the resources to undertake the biomarker project, which would require testing 800 subjects for possible biomarkers, some with normal memories, some with memory impairment, some with Alzheimer’s, and following them for years.
NIA offered $41 million, other institutes contributed $2.4 million, and 20 companies and two nonprofit groups contributed an additional $27 million to fund the project for six years. In late 2009, the institute contributed an additional $24 million and the foundation was working on a 5-year renewal of the project at a similar level.
The initiative has served as a model for similar efforts against Parkinson's disease. A $40 million project to look for Parkinson’s biomarkers, sponsored by the Michael J. Fox Foundation, plans to enroll 600 study subjects in the United States and Europe. ADNI “is the precedent,” said Holly Barkhymer, foundation spokeswoman.
ADNI’s anagram DIAN, the Dominantly Inherited Alzheimer Network, based at Washington University in St Louis, is studying families with a genetic mutation that triggers early onset Alzheimer’s. The mutation makes it possible to predict which members of a family are destined to get the disease, and to compare complete biochemistries with those of relatives who do not have the mutation.
- KOLATA, GINA (August 12, 2010). "Rare Sharing of Data Leads to Progress on Alzheimer’s". New York Times. http://www.nytimes.com/2010/08/13/health/research/13alzheimer.html?src=sch&pagewanted=all. Retrieved August 13, 2010.
- "No end to dementia". The Economist Magazine. June 17, 2010. http://www.economist.com/node/16374470?story_id=16374470. Retrieved August 2010.