Medical Record Abstraction Data
Some medical record data is not available for electronic linkage via the Virtual Data Warehouse (VDW). Therefore, the ACT Study has been conducting an ongoing manual medical record review to abstract additional elements for potential use in future research. These additional data elements, provided by the ACT Life Course Core, are only available on a select sample of ACT participants.
Important note: Only selected data elements that have been abstracted for a subset of participants are available in an adjudicated dataset. Any requests for data beyond the adjudicated elements or for additional participants will be subject to in-depth review to ascertain data availability, effort required to pull the data, and confidentiality of the particular data elements. This would also require external funding to support abstraction staff time.
Study Forms
Not applicable. Because these data elements are extracted directly from participant medical records, no forms are used to collect these data from participants.
A manual of operations for chart review an abstraction is available for reference.
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.