Virtual Kick-Off: NUM4Rare Successfully Launched

The research project NUM4Rare has officially started with a virtual kick-off meeting. More than 40 participants from across the network came together to discuss the project’s objectives, structure, and next steps for collaboration. Further information about the project can be found here.

NUM4Rare is a project of the Network University Medicine (NUM) and aims to establish a national registry infrastructure for people with rare diseases. For the first time, this will create a cross-site and cross-sector data space designed to sustainably strengthen clinical research and healthcare in the field of rare diseases.

Goal: Connected Data for Better Research and Care

At the core of the project is the integration of diverse data sources. These include disease-specific registries, routine clinical care data, data from external national and European registries, patient-reported outcome measures (PROMs), and data from statutory health insurance funds. By harmonizing and integrating these data sources, NUM4Rare will lay the foundation for an improved evidence base in rare diseases. In particular, feasibility and observational studies will be facilitated, patients will be more easily identified for clinical studies, and long-term disease trajectories can be systematically analyzed.

A Joint Starting Point for a Sustainable Infrastructure

In addition to presenting the project structure, the kick-off meeting provided an opportunity for exchange among participating sites and project partners. A shared ambition became clear: to establish a modular, interoperable, and sustainable registry infrastructure that builds on existing NUM structures and is implemented step by step.

With the successful launch, NUM4Rare now enters its operational phase. In the coming months, the focus will be on analyzing requirements for the registry infrastructure from different perspectives, developing technical components, and onboarding the first participating sites.

We would like to thank all participants for the dedicated and productive start and look forward to the collaboration ahead.