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National Alzheimers Coordinating Center


http://www.alz.washington.edu/


Using data collected from the 29 NIA-funded Alzheimer''s Disease Centers (ADCs) across the United States, NACC has developed and maintains a large relational database of standardized clinical and neuropathological research data to facilitate collaborative research. In partnership with the Alzheimer''s Disease Genetics Consortium (ADGC) and the National Cell Repository for Alzheimer''s Disease (NCRAD), NACC provides a valuable resource for both exploratory and explanatory Alzheimer''s disease research. NACC data are freely available to all researchers. NACC will provide help to researchers locating specific classes of specimens and direct them to the individual ADCs, where they may request access to stored specimens. NACC developed and maintains a large relational database of standardized clinical and neuropathological research data collected from each ADC, and this database provides a valuable resource for both exploratory and explanatory Alzheimer''s disease research. Data are submitted continuously by the participating ADC but are frozen and certified app An account is NOT necessary to download UDS data collection forms and documentation or to request data from NACC. Any researcher, whether affiliated with an ADC or not may request a data file for analysis or aggregate data tables. Aggregate data tables requested are produced and returned as soon as the queue allows (usually within 1-3 days depending on the complexity). Data file requests, for the researchers own analysis, require a brief. 1-2 page description of the intended research and usually some initial consultation with a NACC analyst to ensure that the data elements to be included in the file are adequate to address the research question. The data provided are HIPAA de-identified. The database consists of several datasets, and searches may be done on the entire database or on individual datasets. Access is granted by security level. The Minimum Data Set (MDS) - Brief, cross-sectional clinical and demographic data abstracted for subjects enrolled in NIA Alzheimer''s Disease Centers 1984 - 2005. The Uniform Data Set (UDS) - Standardized clinical examination, testing, diagnostic evaluation and data collection protocol with annual longitudinal follow-up. Implemented September 2005 and continuing. Approximately 20,000 subjects have been enrolled in the UDS as of July, 2010. * Neuropathology Data Set (NP) - Neuropathologic features of subjects who had post-mortem neuropathological examination, 1984 - present. These data include those subjects with MDS and/or UDS clinical data. NACC Tissue Location Request- Basic data on all patients enrolled in NIA-funded ADCs since they were established in 1984 have been collected at NACC (established in 1999). There are more than 70,000 subjects enrolled in the ADCs; some of them have provided biological specimens (e.g., brain, CSF, blood, DNA). These specimens were collected under various protocols (depending on the research needs of scientists locally) and are stored at the individual ADCs. A tabulation of the specimens by primary neuropathological diagnosis existing collectively at the ADCs is shown below. NACC will provide help to researchers locating specific classes of specimens and direct them to the individual ADCs, where they may request access to stored specimens.

Keywords

alzheimer''s disease, brain, clinical, data, data set, disease, human, late adult human, neuropathological, neuropathology, specimen, tissue

Resource ID

SCR_007327

Alternate IDs

nif-0000-00203

Related Condition

Alzheimer''s disease, Normal, Neurological disorder, Dementia with Lewy bodies, Alcohol-related Dementia, Dementia, Primary Progressive Aphasia, Progressive Supranuclear Palsy, Corticobasal Degeneration, Huntington''s disease, Prion Disease, Cognitive Dysfunction from medication, Cognitive Dysfunction from Medical Illnesses, Depression, Mental disease, Down''s syndrome, Parkinson''s disease, Stroke, Hydrocephalus, Brain Injury, Central nervous system neoplasm, Control subject, Aging

Website Status

Last checked up

Parent Organization

University of Washington; Washington; USA

Abbreviation(s)

NACC

Related Application(s)

Research

Species

human

Related Disease(s)

Alzheimer''s disease, Normal, Neurological disorder, Dementia with Lewy bodies, Alcohol-related Dementia, Dementia, Primary Progressive Aphasia, Progressive Supranuclear Palsy, Corticobasal Degeneration, Huntington''s disease, Prion Disease, Cognitive Dysfunction from medication, Cognitive Dysfunction from Medical Illnesses, Depression, Mental disease, Down''s syndrome, Parkinson''s disease, Stroke, Hydrocephalus, Brain Injury, Central nervous system neoplasm, Control subject, Aging

Supercategory

Resource

Resource Type

Resource, Biomaterial Supply Resource, Topical Portal, Data Set

Funding Information

NIH Blueprint for Neuroscience Research, NIA, U01 AG016976

Availability

Public: NACC data are freely available to all researchers.

Synonym(s)

National Alzheimer''s Coordinating Center

Proper citation

National Alzheimers Coordinating Center, RRID:SCR_007327

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