Defining and Improving Data Quality in Medical Registries: A Literature Review, Case Study, and Generic Framework

Over the past years the number of medical registries has increased sharply. Their value strongly depends on the quality of the data contained in the registry. To optimize data quality, special procedures have to be followed. A literature review and a case study of data quality formed the basis for the development of a framework of procedures for data quality assurance in medical registries. Procedures in the framework have been divided into procedures for the co-ordinating center of the registry (central) and procedures for the centers where the data are collected (local). These central and local procedures are further subdivided into (a) the prevention of insufficient data quality, (b) the detection of imperfect data and their causes, and (c) actions to be taken / corrections. The framework can be used to set up a new registry or to identify procedures in existing registries that need adjustment to improve data quality.