National Registry for Rare Diseases
– more visibility for the rare ones
NARSE
– more visibility for the rare ones
To date, there is no reliable data on how many people in Germany are affected by rare diseases. Yet only by knowing the frequency and prevalence of diseases can effective action be taken. The National Register for Rare Diseases (NARSE) aims to finally close this gap.
Rare are plenty – but how many?
Some diseases are so rare that there are only a handful of sufferers in Germany or even worldwide. As these diseases are often underdiagnosed and virtually unexplored, it is difficult for those affected and their relatives to communicate with each other. In addition, the lack of reliable epidemiological data makes it extremely difficult to develop evidence-based treatments or new therapies. The National Register for Rare Diseases (NARSE) is the first cross-disease register to provide a comprehensive overview of patients with SE living in Germany.
To this end, the NARSE:
In the current pilot phase, NARSE is initially recording ultra-rare diseases (< 1 : 50,000) for which therapy development may already be possible in the foreseeable future. In cooperation with the Centers for Rare Diseases and research initiatives, NARSE should be able to record the basic data of all rare diseases in the future. In this way, NARSE will create an important basis for effective research efforts and new evidence-based treatment methods.
In the accompanying evaluation project FAIR4Rare, funded by the G-BA’s Innovation Fund, project partners from healthcare research, clinics, registry operators and self-help organizations are examining the extent to which NARSE is accepted by users and what further developments are necessary to establish it in such a way that patients with rare diseases are able to participate more fairly in our healthcare system.
Did you know, that...
Register now!
Help us and register now as a registering doctor or, if you are affected, talk to your doctors about participating. Every data set is valuable!
Register at www.narse.de
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Events
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Research gives hope to the youngest: At the two-year anniversary of the Alliance4Rare research initiative, scientific director Prof. Dr. Annette Grüters-Kieslich reports on the successes, challenges and goals of the…
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