Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
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Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz · May 2017
Review[se-atlas - the health service information platform for people with rare diseases : Supporting research on medical care institutions and support groups].
se-atlas - the health service information platform for rare diseases - is part of the German National Action Plan for People with Rare Diseases and is funded by the German Federal Ministry of Health. The objective of se-atlas as a web-based platform is to illustrate those medical care institutions that are linked to rare diseases, in a transparent and user-friendly way. The website provides an overview of medical care institutions and support groups focusing on rare diseases in Germany. ⋯ Among this data are the current rare diseases centres in Germany, which play a major role in providing patient-centred healthcare by acting as primary contact points for people with rare diseases. Further expansion and maintenance of the data base raises several organisational and software-related challenges. For one, the data should be completed by adding more high-quality information, while not neglecting the existing entries and maintaining their high level of quality in the long term.