Register Research in Rheumatology

The term “medical registers” refers to an organized system in which patient data is prospectively and standardized collected. Medical registers, alongside clinical trials, are important tools in the research of new therapies and the improvement and validation of already established treatment methods. At DRFZ, various registers have been successfully conducted across Germany for years, particularly RABBIT, RABBIT-SpA, RheKISS, and Jumbo.

The methodological advancement of our registers is a key goal of our research group. The expertise of the program area is to be used to optimize the currently running registers and, if necessary, establish new ones.

The core project of the Register Research group is the disease register RABBIT-SpA. RABBIT-SpA was initiated by us in 2017, and over 3,500 patients have already been included. The research questions mainly focus on the long-term effectiveness and safety of medications for treating patients with Axial Spondyloarthritis (axSpA) and Psoriatic Arthritis (PsA).

To further develop the methodology of our registers, the group is already working on various projects. For example, a data protection-compliant process for integrating a medical smartphone app has been planned and implemented. This provides the opportunity to collect patient data through methods other than just questionnaires completed by rheumatologists. The process was designed in a way that allows future integration of other apps.

Another milestone was the implementation of a data protection-compliant process for uploading pseudonymized imaging files into the register. This enables blinded central evaluations of imaging data. Particularly in the area of imaging inflammatory processes in the axial skeleton, there are numerous unresolved questions, so our data, combined with the clinical data from the register questionnaires, provides a valuable resource for addressing many urgent research questions.

Further innovative projects include connecting RABBIT-SpA to the documentation software for rheumatology, RheMIT, and the digitization of RABBIT. A large potential lies in Record Linkage, i.e., the direct linking of register data with other data sources. Currently, a pilot project is being set up to link the RABBIT data with cancer registry data. Other data sources for possible linkage include billing data and other medical registers.