Adult Changes in Thought Study

Medical Record Abstraction Data

Paper Record Data.png Data Description

While participants in the Adult Changes in Thought (ACT) Study are sampled from among Kaiser Permanente Washington (KPWA) members, thus providing opportunity to leverage select electronic heath system data, some medical record data is not standardly available for electronic linkage. As a result, the ACT Study has been conducting an ongoing manual medical record review to abstract additional elements as a resource for potential use in future research.

These additional data elements cover a range of domains such as demographics, health measures and behaviors, medical conditions and health history, medications and labs, and elements from a lifetime health monitoring survey. Reviews to obtain these elements utilize two sources:

  • Paper charts for enrollment that predates potential electronic sources
  • Electronic health records for enrollment after Epic was in use (~2003+)

This additional medical record review data, provided by the ACT Life Course Core, are only available on a select sample of ACT participants. While reviews are ongoing, priority has been given to:

  • Deceased participants who underwent brain autopsy
  • Deceased participants who used insulin during life
  • Participants born longest ago

A manual of operations for this medical record review project is available for reference. 

Note: Any requests for data that would require additional manual medical record review (beyond what is already included) will be subject to review to ascertain feasibility. Additionally, any such requests would require external funding to support our abstraction team in such efforts.

Key Publications

The following publications provide additional detail on the ACT paper medical record abstraction data elements. These may be helpful supporting citations when publishing analyses using these data.

  • Barthold D, Gibbons LE, Marcum ZA, Gray SL, Dirk Keene C, Grabowski TJ, Postupna N, Larson EB, Crane PK. (2021). Alzheimer's Disease-Related Neuropathology Among Patients with Medication Treated Type 2 Diabetes in a Community-Based Autopsy Cohort. Journal of Alzheimer's Disease, 83(3):1303-1312. doi.org/10.3233/JAD-210059. 
  • Sonnen JA, Larson EB, Haneuse S, Woltjer R, Li G, Crane PK, Craft S, Montine TJ. (2009). Neuropathology in the adult changes in thought study: a review. Journal of Alzheimer's Disease, 18(3):703-11. doi.org/10.3233/JAD-2009-1180.