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"A decision with foresight"

Innovation Fund supports FAIR4Rare, the accompanying evaluation for a National Registry for Rare Diseases 

The Innovation Committee at the Federal Joint Committee (G-BA) is funding FAIR4Rare as one of 32 new projects in the field of health services research. It supports the accompanying evaluation of the development process for an open National Registry for Rare Diseases (NARSE). 

"Particularly in the case of rare diseases, we are dependent on digitally networked data across institutions. This brings together the small number of cases and provides important findings from research and care," says Dr. Josef Schepers, coordinator of FAIR4Rare at the Core Unit eHealth and Interoperability of the Berlin Institute of Health at the Charité (BIH), explaining the background to the project and emphasizing: "But only if the data can be found, accessed, interoperable and reusable - in short, correspond to the FAIR-Principals  the findings can be rapidly developed into much-needed therapies in a targeted manner." 

The pilot phase of the National Registry NARSE, initiated by the Eva Luise and Horst Köhler Foundation (ELHKS) with the aim of improving the care of patients with rare diseases, is currently underway. Starting with selected, potentially treatable ultra-rare diseases, the registry aims to increase the visibility of the disease burden of the "orphans of medicine". In addition, patients will be able to network and participate more easily in medical progress thanks to better information.  

In the accompanying evaluation project FAIR4Rare, funded by the Innovation Committee, the project partners from health services research, hospitals, registry operators and patient organizations, led by Dr. Schepers at the Berlin Institute of Health, will examine over a period of 30 months the extent to which the registry meets with acceptance among users and which further developments are necessary to meet the special needs of patients with rare diseases. In addition to surveying users of the registry, it is important to compare data from the Medical Informatics Initiative (MII) and the well-established German Cystic Fibrosis Registry.  

"The accompanying evaluation is essential for the success of NARSE," emphasizes Prof. Dr. Annette Grüters-Kieslich, Chair of the ELHKS. "With the knowledge of what worked well in the test phase and where we can still improve, we will be able to optimize the registry and successfully expand it to other diseases. The Innovation Committee's funding of FAIR4Rare is truly a decision with foresight!"  

This assessment is shared by Prof. Dr. Christopher Baum, Chairman of the BIH Board of Directors and Board Member for Translational Research at Charité. BIH aims to operate and further develop the NARSE registry following the pilot phase during the evaluation period. Because Prof. Baum is convinced: "Sharing data is the prerequisite for medical progress. NARSE and FAIR4Rare can make an important qualitative and quantitative contribution here, so that translation in the field of rare diseases succeeds."

More information about the NARSE project: NARSE – Nationales Register für SE - Eva Luise und Horst Köhler Stiftung (elhks.d

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