Tumor registry versus physician medical record review: A head-to-head comparison of malignant pancreatic neuroendocrine tumor (mPNET) cases

6600 Background: Researchers have underutilized single-institution tumor registry (TR) data, instead using researcher medical record review and/or personal, departmental or institutional databases to identify patients with particular malignancies. However, TR data is becoming increasingly prominent on a national level through broader use of the National Cancer Database (NCDB). We selected mPNETs as example to compare the accuracy of TR identification of these tumors with physician medical record review (MD Review). Methods: For MD Review, the health information services department of a single academic medical center was queried for all patients with pancreatic ICD9 codes (157.0–157.9; 211.6–211.7) January 2000-August 2008. A single physician reviewer analyzed computerized and paper medical records and identified mPNET cases. For TR data, mPNET patients were identified using the TR database with assistance of TR staff by two separate strategies. From January 2000-December 2006, patients were identified by using diagnosis codes from manual review of admission, discharge, clinic and pathology reports. From January 2007-August 2008 the TR used an automated case finding program (CAL by C/NET, California, USA) that downloaded cases with terms and codes related to malignancy. All MD Review- and TR-identified mPNET cases were reviewed by a second investigator blinded to identification strategy to assure consistency of mPNET definitions. Results: Using MD Review, 1194 pts with pancreatic ICD9 codes were identified. After MD Review, 42 mPNET patients were identified and confirmed. In comparison, TR identified 17 patients, of whom 5 were not identified by MD Review. Of the 47 patients identified by either strategy, TR identified 17/47 (32.6%) patients, whereas MD Review identified 42/47 (89.4%). TR identification rate in time periods 1 and 2 were 30% and 40%, respectively. Conclusions: Analysis of an academic tumor registry demonstrates that a substantial proportion of mPNET cases are missed when compared to ICD-9 identification and physician medical record review. Since MD review is imperfect, the TR may be even less effective at identifying PNETs than our data suggest. This may be applicable to other tumor registries and TR-based national studies. No significant financial relationships to disclose.