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J Am Med Inform Assoc. 2012 Jun;19(e1):e125-8. Epub 2012 Feb 9.

Informatics and data quality at collaborative multicenter Breast and Colon Cancer Family Registries.

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Clinical Research Informatics, Lombardi Cancer Center, Georgetown University Medical Center, Washington, DC, USA.


Quality control and harmonization of data is a vital and challenging undertaking for any successful data coordination center and a responsibility shared between the multiple sites that produce, integrate, and utilize the data. Here we describe a coordinated effort between scientists and data managers in the Cancer Family Registries to implement a data governance infrastructure consisting of both organizational and technical solutions. The technical solution uses a rule-based validation system that facilitates error detection and correction for data centers submitting data to a central informatics database. Validation rules comprise both standard checks on allowable values and a crosscheck of related database elements for logical and scientific consistency. Evaluation over a 2-year timeframe showed a significant decrease in the number of errors in the database and a concurrent increase in data consistency and accuracy.

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