NUM4Rare was successfully launched in February 2026 and is currently scheduled to run through July 2028. The project is coordinated by Charité – Universitätsmedizin Berlin, Dresden University of Technology, Frankfurt University Medical Center, and Mainz University Medical Center.

Project details

As part of the Network University Medicine (NUM), the NUM4Rare project aims to establish a nationwide registry infrastructure for patients with rare diseases. To this end, previously fragmented—that is, scattered—information from various sources is being systematically consolidated to make it usable for research and patient care. To achieve this, NUM4Rare links disease-specific and cross-disease registry data with routine clinical data from university medical centers, as well as with data provided by the patients themselves and other external sources.

 

A key focus of NUM4Rare is the development of a virtual data space, which helps create transparency regarding existing datasets and supports researchers in identifying suitable data for their research questions.

 

Another key focus is active patient participation. Among other things, patients are involved through workshops and co-design processes to identify cross-disease and disease-specific Patient-Reported Outcome Measures (PROMs) for rare diseases and to jointly refine a tool for patient-centered self-reporting of PROMs.

 

Role of NARSE & BIH

NARSE is a central component of NUM4Rare and will eventually be fully integrated into its infrastructure. Registry activities are being systematically consolidated to prevent parallel development and, consequently, the duplication of structures. This is fully in line with an interoperable national registry strategy.

The BIH, as the current operator of NARSE, is responsible for its long-term sustainability and organizes activities related to patient engagement.