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NINDS CDE Notice of Copyright
National Alzheimer's Coordinating Center (NACC) Neuropathology Data Form
Availability
Please visit this website for more information about the instrument: National Alzheimer's Coordinating Center

 

The National Alzheimer's Coordinating Center (NACC) Neuropathology Data Form is copyrighted: Copyright © 2006, 2008, 2014, 2020 University of Washington. Created and published by the Neuropathology Steering Committee of the Alzheimer's Disease Centers Program and the National Alzheimer's Coordinating Center (Walter A. Kukull, PhD, Director).
Classification
Supplemental: Parkinson's Disease (PD)
Short Description of Instrument
The National Alzheimer's Coordinating Center (NACC) Neuropathology Data Form is used to collect a selected set of pathological features at autopsy. The Neuropathology Core Leaders Steering Committee, elected by neuropathologists from the National Institute on Aging (NIA)-funded Alzheimer's Disease Research Centers (ADRCs), developed the neuropathology data elements. The Neuropathology Data Form has undergone several revisions since its inception in 2002, the most substantial of which occurred in 2014.

 

The National Alzheimer's Coordinating Center was established in 1999 by the NIA/NIH to facilitate collaborative research. Using data collected from ADRCs across the United States, NACC has developed and maintains a large relational database of standardized clinical and neuropathological research data.
Comments/Special Instructions
A Coding Guidebook is available on the NACC Neuropathology Data Form webpage with detailed, annotated explanations of the NACC Neuropathology Form on an item-level basis, with instructions, operational definitions, and references.
Rationale/Justification
Strengths:

  • The NACC Neuropathology Data Form is periodically updated and improved as scientific knowledge increases. As of September 2020, the form had been revised ten times.

  • The form is well known to many neuropathologists involved in neurodegenerative disease research.

  • The NACC database is one of the largest multi-center databases of carefully curated neuropathologic information that is freely available to researchers worldwide. Data received from NACC ADRCs are checked for consistency, range, logical errors, and missing data.

  • Analyses of data from the NACC Neuropathology dataset have enabled important conceptual breakthroughs. As of October 2017, 462 manuscripts and 420 abstracts had been published using NACC data.

 

Weaknesses:

  • The Neuropathology Data Form includes many data elements that are not commonly encountered in Parkinson's disease.
References
Key Reference:
Beekly DL, Ramos EM, van Belle G, Deitrich W, Clark AD, Jacka ME, Kukull WA; NIA-Alzheimer's Disease Centers. The National Alzheimer's Coordinating Center (NACC) Database: an Alzheimer disease database. Alzheimer Dis Assoc Disord. 2004 Oct-Dec;18(4):270-7.

 

References:

Besser LM, Kukull WA, Teylan MA, Bigio EH, Cairns NJ, Kofler JK, Montine TJ, Schneider JA, Nelson PT. The Revised National Alzheimer's Coordinating Center's Neuropathology Form-Available Data and New Analyses. J Neuropathol Exp Neurol. 2018 Aug 1;77(8):717-726.

 

Mock C, Teylan M, Beecham G, Besser L, Cairns NJ, Crary JF, Katsumata Y, Nelson PT, Kukull W. The Utility of the National Alzheimer's Coordinating Center's Database for the Rapid Assessment of Evolving Neuropathologic Conditions. Alzheimer Dis Assoc Disord. 2020 Apr-Jun;34(2):105-111.

 

The National Institute on Aging, Reagan Institute Working Group on Diagnostic Criteria for the Neuropathological Assessment of Alzheimer's Disease. Consensus Recommendations for the Postmortem Diagnosis of Alzheimer's Disease. Neurobiol Aging. 1997 Jul-Aug;18(4 Suppl):S1-2.

 

Document last updated August 2022