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NACC serves as a repository for data collected at approximately 29 Alzheimer's Disease Centers (ADCs) throughout the United States. The ADCs conduct clinical and biomedical research on Alzheimer's disease and related disorders. Centers enroll their study subjects in various ways, including referral from clinicians, self-referral by patients themselves or concerned family members, active recruitment through community organizations, and volunteers who wish to contribute to research on various types of dementia. Most centers also enroll volunteer control subjects. Study subjects at each center are best regarded as a case series, not necessarily representing all cases of disease in a defined population.
The three main data research sets available from NACC are summarized in the table below. NACC also archives several other, more specialized data sets, as described below.
|Minimum data set
|Uniform Data Set (UDS)
Data Set (NP)
|Years covered||1984 - 2005||Sept. 2005 - present||1984 - present|
|Study subjects||Enrollees followed at ADCs
(with or without dementia)
|Enrollees followed at ADCs
(with or without dementia)
|Subjects who died and underwent autopsy|
|Approx. # of subjects*||74,397||27,776||13,158|
|Approx. # of variables||67||725||85|
|Mainly abstracted retroactively from ADC medical records||Collected prospectively by clinicians, neuropsychologists, and other ADC research personnel, using up to 18 standardized forms at each visit.
Some forms also have Spanish-language and telephone versions.
|Standardized neuropathology form, completed by neuropathologist|
|Time period covered for each subject||Mainly status on last ADC visit; some variables also capture initial-visit status||Initial visit and each annual follow-up visit, plus milestones such as
death or dropout
|Status of brain at autopsy|
|Demographics, cognitive status, clinical dementia diagnosis, selected clinical manifestations, comorbid conditions, MMSE score, vital status, primary neuropathological diagnosis (if died and had brain autopsy)||Sociodemographics on subject and informant, family history, dementia history, neurological exam findings, functional status, neuropsych-ological test results, clinical diagnosis, whether imaging testing done, ApoE genotype||Demographics, date of death, primary and secondary neuropathological diagnoses, presence/absence of neuropathological features of most major dementias, APOE genotype, brain weights|
|Beekly, 2004||Morris, 2006
data forms, guidebooks, and DEDs
|MDS data form, guidebook and data element dictionary||UDS data forms, guidebooks, and data element dictionaries||NP data form, guidebook, and data element dictionary|
*as of the March 1, 2013 data freeze