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  • Programme Area 2

Register Research in Rheumatology

  • Data-Linkage
  • Digital Rheumatology
  • Disease register
  • Spondyloarthritides

How can we use data from medical registers for evidence generation?

Medical registers, alongside clinical studies, are important tools in the research of new therapies and in improving and verifying already established treatment procedures. At the DRFZ, various registers have been successfully conducted nationwide for years. The methodological development of our registers is an important goal of our working group. The expertise of the program area will be utilized to optimize the currently running registers and, if necessary, establish new registers.

In addition to the main project RABBIT-SpA, the working group is focused on the further development of registers. For example, a process for integrating a medical smartphone app has been planned and implemented. Another milestone was the implementation of a data protection-compliant process for uploading imaging files into the register. Further innovative projects include the integration of RABBIT-SpA with the documentation software for rheumatology, RheDAT. A great potential lies in data linkage, which means the direct connection of register data with other data sources. Currently, a pilot project is underway to link RABBIT data with cancer register data. Other potential data sources for linkage include billing data and other medical registers.

Team

+49 (0)30 28460-635
Anne.Regierer@drfz.de

+49 (0)30 28460-665
Stephanie.Lembke@drfz.de

+49 (0)30 28460-636
Lisa.Lindner@drfz.de

+49 (0)30 28460-636
Inken.Padberg@drfz.de

+49 (0)30 28460-636
Andreas.Reich@drfz.de

+49 (0)30 28460-636
Weiss@drfz.de

+49 (0)30 28460-636/-639
Josephin.Baumert@drfz.de

+49 (0)30 28460-665
Anja.Georgi@drfz.de

+49 (0)30 28460-639
Carina.Wittkopp@drfz.de

Main cooperation partners

u003culu003ern tu003cliu003eAG Strangfeld,u003c/liu003ern tu003cliu003eAG Callhoff,u003c/liu003ern tu003cliu003eAG Minden,u003c/liu003ern tu003cliu003eProf. Denis Poddubnyy, Dr. Fabian Proft (Charité Medizinische Klinik mit Schwerpunkt Rheumatologie und Klinische Immunologie, CBF)u003c/liu003ern tu003cliu003eProf. Gerhard Krönke, PD David Simon (Medizinische Klinik mit Schwerpunkt Rheumatologie und Klinische Immunologie, CCM)u003c/liu003ernu003c/ulu003e

u003culu003ern tu003cliu003eProf. Xenofon Baraliakos, Prof. Uta Kiltz, Ruhr Universität Bochum, Rheumazentrum Ruhrgebiet, Herneu003c/liu003ern tu003cliu003eProf. Frank Behrens, Frankfurtu003c/liu003ern tu003cliu003eProf. Georg Schett, Erlangenu003c/liu003ern tu003cliu003eDr. Martin Feuchtenberger, Burghausenu003c/liu003ern tu003cliu003eProf. Hans-Martin Lorenz, Heidelbergu003c/liu003ern tu003cliu003eSonja Froschauer, Theresia Muth, Berufsverband Deutscher Rheumatologen (BDRh)u003c/liu003ern tu003cliu003eDr Silke Zinke, Berlinu003c/liu003ern tu003cliu003eDr. Kirsten Karberg, Berlinu003c/liu003ern tu003cliu003eProf Andreas Krause, Immanuel Hospital, Rheumatology and Clinical Immunology, Berlinu003c/liu003ern tu003cliu003eProf. Christof Specker, Düsseldorfu003c/liu003ern tu003cliu003eAnna Voormann, German Society for Rheumatology (DGRh)u003c/liu003ern tu003cliu003eProf. Mathias Augustin, Hamburgu003c/liu003ern tu003cliu003ePD Stefan Kleinert, Erlangenu003c/liu003ern tu003cliu003eTobias Hartz, Krebsregister Niedersachsenu003c/liu003ern tu003cliu003ePhilipp Kachel, Krebsregister Rheinland-Pfalzu003c/liu003ern tu003cliu003eAlexander Stahmann, MS-Registeru003c/liu003ern tu003cliu003eManuel Burkhardt, Mukoviszidose-Registeru003c/liu003ern tu003cliu003eSebastian Semler, TMF, Berlinu003c/liu003ernu003c/ulu003e

Abbvie, Amgen, Biocon Biologics, Biogen, Celltrion, Hexal, Janssen-Cilag, Lilly, MSD, Novartis, Pfizer, UCB

EuroSpA: European collaboration of SpA registries, Prof. Merete Hetland (Kopenhagen)