Abstract
In 2018, medical transplant data from three institutions were merged to create a German transplant registry. Since June 2021, access to data of the registry has been available. It was planned to analyze the registry data in order to compare special allocation rules with regular allocation for heart, liver, lung, and kidney transplantation. Our approach led to a quality analysis of the registry. Upon request, legacy data (2006-2016) of the registry was provided, divided into 61 elements. From these elements, the user had to compile the required dataset. Data checks were performed for completeness, correct allocation of information, and consistency among different sources. Software used for these tasks included R, SQL, and Excel. The initial elements ("waiting list" elements) of the four types of transplantations contained data from a total of 80,259 originally listed patients. However, these patients were only partially present in other elements resulting in complete datasets reflecting waiting time in only 23%, 30%, 50%, and 96%, and for post-transplantation outcomes in 14%, 11%, 38%, and 13% (heart, liver, lung, and kidney transplantation, respectively). The linking of urgency information with clinical data was successful in only a small proportion, with only 6% for heart transplantation. Incorrect and thus implausible allocations in the case of special allocation rules indicated incorrect entries in the registry. Data from different data providers were inconsistent. The incompleteness and incorrect data allocation raise doubts about the reliability of scientific studies based on the transplant registry. The complex structure also hinders the compilation of a reliable dataset, which is uncommon internationally. New data (acquisition since 2017) has only been available since December 2023. The transplant registry urgently needs restructuring. Competent clinical data management, involving transplant medical expertise, and continuous quality controls are essential in this process.
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