Institute for Medical… Research Patient participation… Online registry for…

Pediatric Rheumatology Online - Core Documentation (KRhOKo) - Web-based recording of disease and therapy progress for the German Rheumatism Research Center Berlin

Project management: Prof. Dr. Petra Knaup

Project partner: Prof. Dr. Minden (DRFZ)

Brief description: The German Rheumatism Research Center Berlin (DRFZ) has so far recorded the course of disease and therapy of children and adolescents with rheumatic diseases within the framework of the children's core documentation on a paper basis using physician, parent and patient forms. Based on the pediatric web-based renal transplant registry CERTAIN, a web-based recording of the children's core documentation is currently being developed. This platform will share the technological basis with CERTAIN, but will also provide access to patients in order to be able to record their questionnaires online. The aim is to provide a platform for the institutions involved in the core documentation of children that will enable them to access the recorded data directly and promptly, and to optimize data processing and evaluation for the DRFZ. KRhOKo has been in the pilot phase since the beginning of 2017 and will then move into regular operation.

Duration: Since 2014

Institute staff: P. Knaup, A. Dudchenko