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Utilizing Routine Care Data of Rare Diseases: Challenges, Chances and Call for Collaboration.

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Title: Utilizing Routine Care Data of Rare Diseases: Challenges, Chances and Call for Collaboration.
Authors: Hübner M; Berlin Institute of Health at Charité, Berlin, Germany.; Charité - Universitätsmedizin Berlin, Berlin, Germany., Schaarschmidt M; Berlin Institute of Health at Charité, Berlin, Germany.; Charité - Universitätsmedizin Berlin, Berlin, Germany., Muratovic H; University of Southern Denmark, Odense, Denmark., Finis C; Berlin Institute of Health at Charité, Berlin, Germany.; Charité - Universitätsmedizin Berlin, Berlin, Germany., Nyoungui E; University Medical Center Goettingen, Goettingen, Germany., Krefting D; University Medical Center Goettingen, Goettingen, Germany., Zschüntzsch J; University Medical Center Goettingen, Goettingen, Germany., Schepers J; Charité - Universitätsmedizin Berlin, Berlin, Germany.; University Medical Center Goettingen, Goettingen, Germany.; University of Southern Denmark, Odense, Denmark., Röttger R; University of Southern Denmark, Odense, Denmark.
Source: Studies in health technology and informatics [Stud Health Technol Inform] 2026 May 21; Vol. 336, pp. 2489-2490.
Publication Type: Journal Article
Journal Info: Publisher: IOS Press Country of Publication: Netherlands NLM ID: 9214582 Publication Model: Print Cited Medium: Internet ISSN: 1879-8365 (Electronic) Linking ISSN: 09269630 NLM ISO Abbreviation: Stud Health Technol Inform Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: <searchLink fieldCode="AU" term="%22Hübner+M%22">Hübner M</searchLink>; Berlin Institute of Health at Charité, Berlin, Germany.; Charité - Universitätsmedizin Berlin, Berlin, Germany.<br /><searchLink fieldCode="AU" term="%22Schaarschmidt+M%22">Schaarschmidt M</searchLink>; Berlin Institute of Health at Charité, Berlin, Germany.; Charité - Universitätsmedizin Berlin, Berlin, Germany.<br /><searchLink fieldCode="AU" term="%22Muratovic+H%22">Muratovic H</searchLink>; University of Southern Denmark, Odense, Denmark.<br /><searchLink fieldCode="AU" term="%22Finis+C%22">Finis C</searchLink>; Berlin Institute of Health at Charité, Berlin, Germany.; Charité - Universitätsmedizin Berlin, Berlin, Germany.<br /><searchLink fieldCode="AU" term="%22Nyoungui+E%22">Nyoungui E</searchLink>; University Medical Center Goettingen, Goettingen, Germany.<br /><searchLink fieldCode="AU" term="%22Krefting+D%22">Krefting D</searchLink>; University Medical Center Goettingen, Goettingen, Germany.<br /><searchLink fieldCode="AU" term="%22Zschüntzsch+J%22">Zschüntzsch J</searchLink>; University Medical Center Goettingen, Goettingen, Germany.<br /><searchLink fieldCode="AU" term="%22Schepers+J%22">Schepers J</searchLink>; Charité - Universitätsmedizin Berlin, Berlin, Germany.; University Medical Center Goettingen, Goettingen, Germany.; University of Southern Denmark, Odense, Denmark.<br /><searchLink fieldCode="AU" term="%22Röttger+R%22">Röttger R</searchLink>; University of Southern Denmark, Odense, Denmark.
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              Text: 2026 May 21
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