There are many rare diseases - but how many?
To date, there is no reliable data on how many people in Germany are affected by rare diseases. Research and care are "flying blind", which makes the development of evidence-based treatments and new therapies extremely difficult. The National Register for Rare Diseases (NARSE) closes this gap.
All patients in Germany who have been diagnosed with a rare (prevalence of less than 1:2000) or ultra-rare (prevalence of less than 1:50,000) disease are to be recorded in the NARSE. The entry is made by the treating physicians based on consent; at the end of 2024, this will also be possible for those affected themselves.
Sharing data is a prerequisite for medical progress - even more so for people with rare diseases. Help us and register now as a registering doctor or, if you are affected, talk to your doctors about participating.
Click here to register.
NARSE works according to standardized data protection principles, which enables data to be shared at European and international levels and with hospital information systems that work according to FAIR principles. The entry of less than 40 data elements is straightforward. As an epidemiological registry, NARSE can become an important anchor for future disease-specific research registries and other databases.
The registry was initiated by the Think Tank of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases and implemented by the Berlin Institute of Health at Charité together with the Institute for Medical Informatics at Goethe University Frankfurt. It is operated by the Berlin Institute of Health at Charité - Universitätsmedizin Berlin.