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LEADING THE FEDERAL EFFORT ON AGING RESEARCH

NIA Initiatives for AD Research


Several NIA initiatives provide critical venues through which investigators can conduct interdisciplinary and collaborative AD research.

Alzheimer’s Disease Centers

The NIA-funded Alzheimer’s Disease Centers (ADCs) promote basic research, training and education, and technology transfer (www.nia.nih.gov/Alzheimers). They also conduct multi-center and collaborative studies of diagnosis and treatment in AD, age-related neurodegenerative diseases, and normal aging.

grandfather and granddaughterMany milestones in AD research in the U.S. since 1984 stem from research carried out at the ADCs. For example, ADC research has revealed much about the linkage and cloning of genes on chromosomes 1, 14, and 21 in early onset Alzheimer’s disease, chromosome 17 in frontotemporal dementia, subsequent studies on processing of proteins coded by these genes, and the identification of the inherited risk factor for late-onset disease, APOE, on chromosome 19. Much of the work related to processing of proteins important for plaque and NFT formation, including the discovery of alpha synuclein in Lewy body dementia, and the recognition of the common properties of amyloids found in various neurodegenerative diseases, has been carried out in the ADCs. Recently, progranulin and the TDP43 protein were both discovered by ADC researchers and have contributed to our understanding of one type of frontotemporal dementia and motor neuron disease. Important studies that correlate pathologic changes in brain structure and function with preclinical and clinical evidence of disease are being conducted with people enrolled in ADC clinical studies. Complementary studies, such as imaging studies and autopsy evaluations, also are conducted at ADCs. In recent years, the centers have placed increasing emphasis on evaluating cognitive function in healthy aging and the transition to amnestic MCI and early dementia, as well as mixed dementias and overlapping dementia syndromes. Another growing focus for the ADCs is collaborative trans-center projects and collaborations with investigators outside the centers’ network.

In addition to performing cutting edge research, the ADCs provide essential resources from which other research projects like the ADCS, the AD Genetics Initiative, and the AD Neuroimaging Initiative can draw (see the following sections for more on these initiatives). These resources include a cadre of researchers well versed in all aspects of AD, access to patient and family data, brain and other tissue samples, and molecular probes, as well as outreach programs that work with diverse groups, including minority and rural populations.

National Alzheimer’s Coordinating Center

In 1999, NIA established the National Alzheimer’s Coordinating Center (NACC)  so that data on patients from the ADCs could be pooled and shared (www.alz.washington.edu). At the beginning, it was only possible to collect a minimum data set (MDS) with a limited number of variables. Eleven collaborative multi-center studies were funded by NACC and an additional seven collaborative investigator-initiated grants funded by NIA were linked to NACC and used data from the MDS. Between 1984 and 2005, information on more than 75,000 ADC study participants and neuropathological data on more than 9,000 brains from autopsied participants were collected in the MDS. Much of this material is available for research by qualified scientists.

Although the MDS collected the same data from all study participants, the centers did not collect the data in a standardized way, and the number of data points was limited. This prevented investigators from comparing data from one center to another. Standardized data collection allows data from multiple centers to be pooled, creating larger samples and the potential for more sophisticated and informative analyses than would be possible with data from only one center. The Uniform Data Set (UDS), which replaced the MDS in 2005, contains many more data elements and will be much more useful for research. The clinical task force designed the UDS initially for healthy participants and those with amnestic MCI and early AD, and is now developing new modules to collect data on participants with frontotemporal dementia, Lewy body dementia, and vascular dementia. More than 7,000 individuals are now being evaluated using the UDS, and the data are available to qualified researchers through NACC.

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Page last updated Nov 25, 2008

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