On 18 February, NUM4Rare was officially launched with a virtual kick-off - attended by over 40 committed participants. NUM4Rare is a research project of the Network of University Medicine (NUM) with a clear goal: to establish a national registry infrastructure for people with rare diseases. The focus is on linking different data from
- disease-specific registries
- routine clinical documentation
- patient self-documentation
- external registries
- as well as GKV data
In this way, a cross-location and cross-sector data space for rare diseases is being created step by step - as a basis for better research, targeted studies and improved care in the long term.