Adult Changes in Thought Study

Neuropathology Data

Neuropathology Data.png Data Description

Some participants of the Adult Changes in Thought (ACT) Study consent to brain autopsy upon death, generously donating their brain for neuropathological assessment by the ACT Neuropathology Core. Tissue and data elements derived from those assessments of ACT participant brains are collected and stored. The standard ACT neuropathology dataset contains measures from ACT participants who died and for whom neuropathological assessment was completed.

As of the most recent ACT data freeze which covers visits, outcomes, and other linked data through November 25, 2022, the standard ACT neuropathology dataset contains derived data elements from neuropathological assessment of 971 ACT participants. Examples of these data elements include measures of amyloid pathology, neurofibrillary tangles, TDP-43, Lewy body pathology, hippocampal sclerosis, atherosclerosis, arteriolosclerosis, and infarcts (vascular brain injury). Please consult the linked data dictionary at the bottom of this page for a complete listing of these elements (see 'Neuropathology - Standard' under Supplementary Data).

Researchers interested in neuropathological assessment measures that are not currently represented in the standard ACT neuropathology  dataset should please reach out to the ACT Neuropathology Core to discuss potential availability of those measures on ACT participants. Researchers interested in tissue samples for their proposed research more broadly (not necessarily exclusive to ACT) are advised to contact our University of Washington partners at the BraIN Laboratory.

Key Publications

The following publications provide additional detail on the neuropathology data elements. These may be helpful supporting citations when publishing analyses using these data.

  • Marcum ZA, Keene CD, Larson EB. (2021). Leveraging neuropathological data in pharmacoepidemiology: A promising approach for dementia prevention? Pharmacoepidemiology and Drug Safety, 30(1), 1-3. doi.org/10.1002/pds.5068. 
  •  Lee CS, Latimer CS, Henriksen JC, Blazes M, Larson EB, Crane PK, Keene CD, Lee AY. (2021). Application of deep learning to understand resilience to Alzheimer's disease pathology. Brain Pathology (Zurich, Switzerland), 31(6), e12974. doi.org/10.1111/bpa.12974. 
  • Postupna N, Rose SE, Gibbons LE, Coleman NM, Hellstern LL, Ritchie K, Wilson AM, Cudaback E, Li X, Melief EJ, Beller AE, Miller JA, Nolan AL, Marshall DA, Walker R, Montine TJ, Larson EB, Crane PK, Ellenbogen RG, Lein ES, Dams-O'Connor K, Keene CD. (2021). The Delayed Neuropathological Consequences of Traumatic Brain Injury in a Community-Based Sample. Frontiers in Neurology, 12, 624696. doi.org/10.3389/fneur.2021. 

Data Dictionary

A data dictionary is available to provide additional information about ACT data variables.