“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. What was needed was to get everyone together and to get a common data set.”
— Michael W. Weiner, M.D.
ADNI Principal Investigator
Photo: Courtesy of the USC Laboratory of Neuro Imaging and Athinoula A. Martinos Center for Biomedical Imaging, Consortium of the Human Connectome Project
http://www.humanconnectomeproject.org
Changing the Prognosis of Alzheimer’s Disease
First discovered 110 years ago, Alzheimer’s disease still has no cure or effective treatment. More than five million Americans suffer from this progressive brain disorder, with estimates by the National Institute on Aging (NIA) suggesting it is the third leading cause of death for older adults. For years, scientists have labored with limited success to find breakthroughs that would aid in the diagnosis and treatment of this devastating disease. But in 2004 an unprecedented study called the Alzheimer’s Disease Neuroimaging Initiative (ADNI)—which entered its third phase in 2016—united scientists across multiple sectors to change the prognosis for developing new treatments.
“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,” Michael W. Weiner, M.D., ADNI Principal Investigator, San Francisco Department of Veterans Affairs Medical Center and the University of California, San Francisco, told The New York Times in 2010. “What was needed was to get everyone together and to get a common data set.”
ADNI fulfilled this need by bringing the public and private sectors together to uncover the biological markers (biomarkers) that track Alzheimer’s disease progression. The longitudinal study uses imaging, biochemical and genetic data to identify changes taking place in the brains of 800 individuals with normal cognition and different stages of the disease. Most significantly, the data are made immediately available to researchers at any organization.
Fulfilling its unique and instrumental role, the FNIH brought all of the necessary parties together. By the launch of the first phase of ADNI, NIA contributed $41 million, other National Institutes of Health Institutes provided $2.4 million and 20 companies and two not-for-profit organizations donated $27 million through the FNIH.
More than 30 organizations have supported ADNI since launch and researchers are tracking volunteers at 58 clinical sites in North America. The third phase of ADNI (ADNI3) launched in September 2016. NIA support is expected to total $40 million over the course of ADNI3 and an additional $20 million is sought by the FNIH from the private sector. Additions to ADNI3 include recruiting more patient volunteers, using state-of-the-art imaging to monitor brain levels of tau (a protein that is often abnormal in Alzheimer’s patients) and performing cutting-edge analyses to assess complex interactions between the brain and body. ADNI3 also will assess cognitive function through computer tests at home and in the doctor’s office.
After 12 years, ADNI continues to advance the field of Alzheimer’s disease, while serving as a model for how public-private partnerships can lead to otherwise unattainable research progress. By standardizing technologies and protocols, ADNI has improved clinical trial design and influenced the development of other partnerships in areas such as Parkinson’s disease and multiple sclerosis, and its open-access data policy serves as a model of successful precompetitive data sharing. ADNI data have been downloaded for research purposes more than 14 million times and scientists worldwide have used them to publish more than 1,200 scientific papers, leading to a better understanding of the relationship between biomarkers and Alzheimer’s disease progression—and hopefully, one day soon, new and effective treatments.