[Shortfalls of new data 2017-2020 in the German transplant registry]

Science and Research

INTRODUCTION: Recently, considerable deficiencies of legacy data (2006–2016) of the newly established German Transplant Registry were described. Current data (2017–2020) of the registry are subject to the present assessment. MATERIAL AND METHODS: The registry is divided in 80 elements containing different topics. From those elements the required dataset needs to be extracted by the investigator. We analyzed data on heart, liver, lung and kidney transplantation, focusing on the comparison of data published in the Eurotransplant (ET) statistics library with registry data. Moreover, data provided by ET to the registry were compared with data provided by the German Institute for Medical Quality Assurance (IQTIG). Excel and SPSS were used as statistical software. RESULTS: According to the ET statistics, 21 632 patients entered the waiting list (WL). The corresponding elements of the registry contain 16 272 patients, which means that 25 % of patients listed by ET are not included in the registry. The quotient of patients deceased on the WL versus transplanted patients is 0.25 according to the ET statistics, but 0.13 according to the registry. The identity of patients in the waiting list elements provided by ET differ by 75 % from those of the IQTIG. The compilation of a complete data set from the follow-up elements also fails due to the low proportion of identical patients (less than 30 %) in the respective elements. Three-year survival rate deviates by up to 18 % from the results published by the IQTIG. DISCUSSION: The number of patients listed by ET for transplantation is incomplete in the registry, which is due to the informed consent required for data storage in Germany. Considerable heterogeneity of patients and data provided by different institutions, the lack of concatenation and redundancy of data make scientific studies impossible. CONCLUSION: The German Transplant Registry needs to be fundamentally reorganized. Above all, the mandatory consent to data storage and the uncritical inclusion of data provided by various institutions render the current registry useless.