Se-atlas - the health service information platform for people with rare diseases : Supporting research on medical care institutions and support groups

Abstract

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 aweb-based platform is to illustrate those medical care institutions that are linked to rare diseases, in atransparent and user-friendly way. The website provides an overview of medical care institutions and support groups focusing on rare diseases in Germany. The primary target groups of se-atlas are affected patients, their relatives and physicians but can also include non-medical professionals and the general public. In order to make it easier to look up medical care institutions or support groups and optimize the search results displayed, various strategies are being developed and evaluated. Hence, the allocation of diseases to appropriate medical care institutions and support groups is currently amain focus. Since its launch in 2015, se-atlas has grown continuously and now incorporates five times more entries than were included 20months prior. Among this data are the current rare diseases centres in Germany, which play amajor 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.