Tumor registry versus physician medical record review: a direct comparison of patients with pancreatic neuroendocrine tumors.

PURPOSE: Tumor registry (TR) data are becoming more prominently cited in research through increased use of the National Cancer Database. We aimed to establish the accuracy of TR data by comparing them with physician medical record review (MD review) using pancreatic neuroendocrine tumors (NETs) as an example.
METHODS: For MD review, the health information system of an academic medical center was queried for patients with pancreatic International Classification of Diseases, ninth revision (ICD-9), codes from January 2000 to August 2008. A single physician investigator analyzed those medical records and identified patients with pancreatic NETs. For TR data, patients with pancreatic NETs were identified by two separate strategies. For the period of January 2000 to December 2006, patients were identified through manual review of pathology reports, admission and discharge sheets, and clinic visit logs. For January 2007 to August 2008, patients were identified using an automated case-finding program.
RESULTS: In MD review, 1,192 patients with pancreatic ICD-9 codes were identified, 34 of whom were found to have pancreatic NETs. The TR indicated 15 patients with pancreatic NETs, four of whom were not identified during MD review. Of the total 38 patients identified by either strategy, pancreatic NET identification rate of the TR was 39.5% compared with 89.5% in MD review.
CONCLUSION: Academic TR analysis indicates a substantial proportion of patients with pancreatic NETs are not identified when compared with MD review. Most instances of patients going unidentified are the result of registry time lag and case-finding methodologies; specifically, physicians may define tumors with malignant potential differently. This may be applicable to other individual tumor registries as well as aggregate registry-based national studies.