About the project
NUM4Rare is establishing a national registry infrastructure for rare diseases and is thus expanding the existing data space in the Network University Medicine (NUM) to include data from patients with rare diseases. The aim is to bring together previously fragmented information from different sources in a structured way and make it usable for research and care.
To this end, NUM4Rare links disease-specific and cross-disease registry data with routine clinical data from the Data Integration Centres (DIZ) of university medicine and with Patient-Reported Outcome Measures (PROMs).
The most important facts at a glance
NUM4Rare aims to sustainably strengthen research and care in the field of rare diseases by establishing a joint, sustainable data infrastructure.
- Establishment of a national registry infrastructure for rare diseases in the Network University Medicine
- Expansion of the national data space by linking registries, routine clinical data from the DIZ and PROMs
- Testing the infrastructure in specific medical applications (e.g. neonatal screening, PROMs)
- Creation of a reliable database for efficient research and improved care for rare diseases in the future
Research and care in the field of rare diseases is associated with particular technical, structural and organisational challenges.
- Fragmented data landscape with distributed information from different registries, care areas and IT systems
- Different requirements of the sectors involved, e.g. clinic, research, registry operation and patient participation
- Heterogeneous digital maturity levels of the sites, particularly with regard to data availability, standardisation and automation
- Lack of standardised structures for the long-term recording of disease progression and patient-relevant endpoints
NUM4Rare addresses these challenges by establishing a common, scalable infrastructure in the NUM that utilises existing structures, takes into account different requirements and is gradually developed further.
The project set-up of NUM4Rare is designed to take into account the different requirements at the locations and to enable a gradual, sustainable introduction.
- Modular architecture that allows flexible use and further development of individual components
- Based on existing NUM infrastructures, in particular DIZ, NUKLEUS and NUM-MB
- Gradual roll-out with first-time user, subsequent user and extension partner locations
- Consideration of different levels of digital maturity in order to adapt development, testing and roll-out to specific locations
- Early integration of sustainability and continuity to ensure the long-term operation of the register infrastructure beyond the project duration