Description of the NACC database

The NACC database is made up of three main research data sets:

From 2005 to the present, ADCs have been contributing data to the Uniform Data Set (UDS), using a prospective, standardized, and longitudinal clinical evaluation of the subjects in the National Institute on Aging's ADC Program.

In 2012, a new module was added to the UDS to collect detailed clinical information related to frontotemporal lobar degeneration (FTLD). The FTLD Module is voluntarily completed by ADCs.

Beginning in 1984 and ending with the 2005 implementation of the UDS, brief, single-record descriptions of ADC subjects were collected retrospectively to form the Minimum Data Set (MDS).*

The Neuropathology Data Set (NP) contains autopsy data for a subset of both MDS and UDS subjects. Please note that changes in diagnostic criteria and staining methods may limit the available data for certain analyses.

Data collection activities are ongoing for the UDS, FTLD Module, and NP Data Sets. Please refer to the table below for more detailed information.

*Because of the lack of detailed, longitudinal, and standardized clinical data in the MDS, the utility of the MDS for research is limited, and combining the clinical data in the MDS with the UDS is generally not recommended.

More information about NACC data:

  Uniform Data Set (UDS) (LONGITUDINAL) Neuropathology Data Set (NP) Minimum Data Set (MDS)
UDS FTLD Module Data with associated UDS visit(s) Data with no associated UDS visit (MDS only)
Years covered Sep 2005 – present Feb 2012 – present 2005 – present 1984 – 2005 1984 – 2005
Study subjects Enrollees followed at ADCs
(with or without dementia)
UDS subjects
who died and underwent autopsy
MDS-only subjects who died and underwent autopsy Enrollees followed at ADCs (with or without dementia)
Approx # of subjects 30,955 640 4,000 10,000 74,397
Approx # of variables 725 379 85 67
Method
of data collection
Collected prospectively by clinicians, neuro-psychologists, and other ADC research personnel, using up to 18 standardized forms at each visit. Some forms also have Spanish-language and telephone versions. Collected prospectively by clinicians, neuro-psychologists, and other ADC research personnel, using up to 13 standardized forms at each FTLD Module visit. Standardized neuropathology form, completed by neuropathologist Mainly abstracted retroactively from ADC medical records
Time period covered for each subject Initial visit and each annual follow-up visit, plus milestones such as death or dropout Initial FTLD Module visit and annual follow-up visit Status of brain at autopsy Mainly status on last ADC visit; some variables also capture initial-visit status
Topics covered (brief list)
  • Sociodemographics
    on subject and co-participant
  • Family history
  • Dementia history
  • Neurological
    exam findings
  • Functional status
  • Neuropsychological
    test results
  • Clinical diagnosis
  • Imaging availability
  • APOE genotype
  • Family history
  • Neurological and motor exam findings
  • Clinical bvFTD and
    PPA findings
  • Neuropsychological
    test results
  • Social norms
  • Social behavior
  • Co-participant questionnaires
  • Imaging availability
  • Demographics
  • Date of death
  • Presence or absence of neuropathological features of most
    major dementias
  • Demographics
  • Cognitive status
  • Clinical diagnosis
  • Selected clinical manifestations
  • Comorbid conditions
  • MMSE score
  • Vital status
Publications describing data set   Beekly 2004 Beekly 2004
Links to
data forms, guidebooks, and DEDs
UDS data forms, guidebooks, and data element dictionariesFTLD data forms, guidebooks, and data element dictionaries NP data form, guidebook, and
data element dictionary
MDS
data form, guidebook, and data element dictionary

*as of the September 1, 2014 data freeze