NUM4Rare has been successfully launched. The project is establishing a national registry infrastructure for rare diseases and is thus expanding the existing data room in the Network of University Medicine (NUM) to include data from patients with rare diseases.
Following the official online kick-off in February with over 40 participants, a face-to-face kick-off took place in April, where experts from the clinic, medical informatics, patient representation, registry operations and other NUM structures came together to discuss the goals and next steps of the project.
Initial work on the project has already started successfully. One focus is currently on analysing the requirements for the planned "Virtual Data Space for Rare Diseases". This involves incorporating the perspectives of various stakeholders - including research, data provision, medicine, patient representatives, industry and business. In future, the virtual data room will provide an overview of what data is available for rare diseases and where it can be accessed, without having to collate sensitive health data itself.
Interested stakeholders are cordially invited to participate in the ongoing requirements analysis:
The survey will run until 31 May 2026. The results will be incorporated into the further design of the NUM4Rare infrastructure and will help to anchor it in the NUM in a needs-based, connectable and sustainable manner.