National Alzheimer’s Coordinating Center Data

Alternate Titles(s): NACC
UID: 10491
Description

The National Alzheimer’s Coordinating Center (NACC) was created in 1999 to facilitate research with data collected from Alzheimer's Disease Research Centers (ADRCs) across the United States. NACC oversees data collection and sharing for a number of datasets.

  • The Uniform Data Set (UDS) contains longitudinal and standardized data collected from ADRCs since 2005. ADRC enrollment protocols vary and some ADRCs include volunteers with normal cognition. Each participant contributes data during annual visits to ADRCs, during which 16 data collection forms are completed with clinicians. In addition to the 16 forms, a subset of participants also complete the Frontotemporal Lobar Degeneration (FTLD) Module, the Lewy-body Dementia (LBD) Module, or the Down Syndrome (DS) Module. As of December 31, 2021, there are 44,713 subjects in the UDS.
  • The Minimum Data Set (MDS) contains retrospectively compiled records of ADRC participants from 1984 to 2005 prior to the implementation of the UDS. The MDS does not contain detailed, longitudinal, or standardized clinical data.
  • The Neuropathology (NP) Data Set includes autopsy data collected on UDS and MDS participants using standardized neuropathological evaluation forms.
  • The Biomarker and Imaging Data Set includes MRI, PET, cerebrospinal fluid measurements (Abeta, P-tau, and T-tau), and limited genetic data (APOE genotype) contributed by a subset of UDS participants.
Publisher
Timeframe
1984 - Present
Geographic Coverage
United States
Local Expert
Subject of Study
Subject Domain
Population Age
Adult (19 years - 64 years)
Senior (65 years - 79 years)
Aged (80 years and over)
Keywords

Access

Restrictions
Free to All
Application Required
Author Approval Required
Instructions
NACC will share data with researchers at no cost. To request data, interested researchers must submit a proposal with a unique research hypothesis, answer a few questions about their project, and complete a Data Use Agreement. A list of accepted proposals may be reviewed here. NACC will respond in three business days with an acknowledgement of receipt or to request further clarification. Researchers with approved projects will receive a user name, password, and link to download their custom data files.
Access via NACC

Application links and instructions

Associated Publications
Data Type
Study Type
Observational
Dataset Format(s)
SAS, SPSS, CSV
PubMed Search
View articles which use this dataset
Other Resources
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