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Sharing EHR data of patients with rare diseases for research - The role of quality assessments in a national federated research data infrastructure.

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Title: Sharing EHR data of patients with rare diseases for research - The role of quality assessments in a national federated research data infrastructure.
Authors: Tahar K; Department of Medical Informatics, University Medical Center Göttingen, Georg-August-University, 37075, Göttingen, Germany. Kais.Tahar@med.ovgu.de.; Institute for Public Health in Acute Medicine, University Medicine Magdeburg, Magdeburg, Germany. Kais.Tahar@med.ovgu.de., Verbuecheln R; Medical Data Integration Center, University Hospital Tübingen, Tübingen, Germany., Martin T; Centre for Rare Diseases, University Hospital Tübingen, Tübingen, Germany., Graessner H; Centre for Rare Diseases, University Hospital Tübingen, Tübingen, Germany., Biergans S; Medical Data Integration Center, University Hospital Tübingen, Tübingen, Germany., Krefting D; Department of Medical Informatics, University Medical Center Göttingen, Georg-August-University, 37075, Göttingen, Germany.
Source: BMC medical informatics and decision making [BMC Med Inform Decis Mak] 2026 Mar 02; Vol. 26 (1). Date of Electronic Publication: 2026 Mar 02.
Publication Type: Journal Article
Journal Info: Publisher: BioMed Central Country of Publication: England NLM ID: 101088682 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-6947 (Electronic) Linking ISSN: 14726947 NLM ISO Abbreviation: BMC Med Inform Decis Mak Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: <searchLink fieldCode="AU" term="%22Tahar+K%22">Tahar K</searchLink>; Department of Medical Informatics, University Medical Center Göttingen, Georg-August-University, 37075, Göttingen, Germany. Kais.Tahar@med.ovgu.de.; Institute for Public Health in Acute Medicine, University Medicine Magdeburg, Magdeburg, Germany. Kais.Tahar@med.ovgu.de.<br /><searchLink fieldCode="AU" term="%22Verbuecheln+R%22">Verbuecheln R</searchLink>; Medical Data Integration Center, University Hospital Tübingen, Tübingen, Germany.<br /><searchLink fieldCode="AU" term="%22Martin+T%22">Martin T</searchLink>; Centre for Rare Diseases, University Hospital Tübingen, Tübingen, Germany.<br /><searchLink fieldCode="AU" term="%22Graessner+H%22">Graessner H</searchLink>; Centre for Rare Diseases, University Hospital Tübingen, Tübingen, Germany.<br /><searchLink fieldCode="AU" term="%22Biergans+S%22">Biergans S</searchLink>; Medical Data Integration Center, University Hospital Tübingen, Tübingen, Germany.<br /><searchLink fieldCode="AU" term="%22Krefting+D%22">Krefting D</searchLink>; Department of Medical Informatics, University Medical Center Göttingen, Georg-August-University, 37075, Göttingen, Germany.
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  Data: <searchLink fieldCode="JN" term="%22101088682%22">BMC medical informatics and decision making</searchLink> [BMC Med Inform Decis Mak] 2026 Mar 02; Vol. 26 (1). <i>Date of Electronic Publication: </i>2026 Mar 02.
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