- BMBF
LinKMedR – Integrating Cancer Registry Data with Other Medical Registries
This collaborative project, involving the RABBIT registry, the German Multiple Sclerosis Registry, the Cystic Fibrosis Registry, and the state cancer registries of Lower Saxony and Rhineland-Palatinate, aims to develop a process for linking data from the state cancer registries with other medical registries in full compliance with data protection regulations. For the first time, analytical datasets will be created that combine data from the respective medical registries with selected data from the unified Oncological Basic Dataset (oBDS) of the German cancer registries.
01.10.2024-30.9.2025
Head of project
Project Objectives
- Assess the feasibility of data matching under the specific regulatory framework in Germany, including a comprehensive legal analysis of data protection in accordance with the General Data Protection Regulation (GDPR) for research purposes.
Clinical Research Questions: - RABBIT Registry: Investigating the cancer risk in rheumatoid arthritis (RA) patients undergoing treatment with various anti-rheumatic medications.
- MS Registry: Analyzing the incidence of cancer and the impact of therapy on cancer development in patients with multiple sclerosis (MS).
Significance of the Project
The ability to link data from medical registries with other data sources, such as cancer registry data, is a highly relevant and timely issue, whether in the context of upcoming registry legislation or within the scope of the European Health Data Space (EHDS). Enhancing existing data sources through integration and leveraging them to address clinical research questions is vital. The project’s outcomes, particularly regarding the connection between various diseases and cancer, have the potential to inform long-term therapeutic decisions and significantly improve the quality of life for affected individuals.