Evolving methodologies in computerized European Registries

Abstract

The histories and present roles of four European Registries are described. Three are transplant sharing organizations, Eurotransplant (ET), Scandiatransplant (ST), and the United Kingdom Transplant Service (UKTS). The Registry of the European Dialysis and Transplant Association is a patient Registry that tracks patients on dialysis as well as after transplantation and follows them from center to center. The transplant organizations collaborate by linking patient records on the EDTA Register. These large central Registries have evolved specialized computer methodologies for recording the follow-up of patients, researching the patient file, and improving the service to centers. The log-rank test is useful for the evaluation of pooled results. Reliability of donor typings can be verified by testing results for the Hardy-Weinberg equilibrium. A method for the prediction of pool size required to find matched recipients is described. Collaborative studies have been carried out in an attempt to discover the factor(s) responsible for the 'center effect'. New trends in analysis of transplant results will include detailed documentation of rejection episodes. Compliance by centers contributing to the transplant organizations is ensured by the need for organ interchange, whereas the EDTA Registry depends on the directors of centers being motivated by the publication of pooled statistics and results and by the provision of feedback information to the individual units.