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Digital database to provide a better basis for the treatment of recurring urinary stones / Ten university hospitals involved under the leadership of the University Medical Center Freiburg / Model project in the nationwide initiative for the digitalization

Around 800,000 people in Germany suffer from painful urinary stones every year. For many sufferers, they recur despite medication and surgery. The Federal Ministry of Education and Research (BMBF) is now funding the establishment of a "National Register for Recurrent Stone Diseases of the Upper Urinary Tract" under the direction of the University Medical Center Freiburg. The registry will be integrated into the nationwide medical informatics initiative and funded with two million euros for five years. A total of ten urological university clinics throughout Germany are participating in the project.

"Our clinics have comprehensive data on the course and treatment of many diseases, including urinary stone diseases. Our aim is to make the available information digitally usable and to use it for the development of targeted individual therapies," says project leader Prof. Dr. Martin Schönthaler, senior physician at the Department of Urology at the Freiburg University Medical Center. Existing data from the clinical information systems of the participating centers will be used in processed form and supplemented by information from a patient app. "The project can make a significant contribution to improving diagnostic, therapeutic and preventive measures for people with recurrent urinary stones," says Schönthaler.

Quality of life, risk factors and personalized therapy selection

The digital register will be used to answer questions in three important areas: What impact does the disease have on the quality of life and ability to work of those affected? What are the risk factors for recurring urinary stones, such as lifestyle and diet? Which therapy helps which patient best? The research team wants to use this information to create a ranking that reflects the risk of an individual patient and personalizes treatment recommendations to a greater extent.

The BMBF is funding the project as part of the Medical Informatics Initiative's "Development of model registries for healthcare research" program. Such registries can close a gap that exists in traditional studies. "Especially when comparing surgical treatment procedures, it is often difficult to find enough study participants. Here, cross-site data collection can help to make important statements about the efficacy and safety of such interventions," says Schönthaler.

The "model" character of the data registry lies in particular in the planned fully electronic data collection. The link between the registry project and the federal medical informatics initiative and specifically the medical informatics consortium MIRACUM enables comprehensive data collection and analysis. "The development of the urinary stone register is also a kind of prototype of how the digital infrastructure of such a nationwide register should be designed," says Schönthaler.

The network, which consists of ten university hospitals, will be opened up to other university hospitals, non-university institutions and outpatient care providers over the course of the project. In addition to the Department of Urology, the Department of Health Services Research and Rehabilitation Research (Prof. Dr. Erik Farin-Glattacker) and the Institute of Medical Biometry and Statistics (Prof. Dr. Harald Binder, Privatdozent Dr. Martin Boeker) at the University Medical Center Freiburg and the Institute of Medical Informatics, Biometry and Epidemiology (Prof. Dr. Hans-Ulrich Prokosch) at the University of Erlangen are also involved in the project management.

Contact: 
Prof. Dr. Martin Schönthaler 
Project manager and senior physician 
Department of Urology 
University Medical Center Freiburg 
Phone: 0761 270-27120 
martin.schoenthaler@uniklinik-freiburg.de