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00925njm 22002777a 4500 dc Kodra, Yllka author Weinbach, Jérôme author Posada De la Paz, Manuel author Coi, Alessio author Lemonnier, S Lydie author van Enckevort, David author Roos, Marco author Jacobsen, Annika author Cornet, Ronald author Ahmed, S Faisal author Bros-Facer, Virginie author Popa, Veronica author Van Meel, Marieke author Renault, Daniel author von Gizycki, Rainald author Santoro, Michele author Landais, Paul author Torreri, Paola author Carta, Claudio author Mascalzoni, Deborah author Gainotti, Sabina author Lopez-Martin, Estrella author Ambrosini, Anna author Müller, Heimo author Reis, Robert author Bianchi, Fabrizio author Rubinstein, Yaffa author Lochmüller, Hanns author Taruscio, Domenica author 2018 Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key information system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry. In response to these heterogeneities, in the framework of RD-Connect, a European platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research, we report on a list of recommendations, developed by a group of experts, including members of patient organizations, to be used as a framework for improving the quality of RD registries. This list includes aspects of governance, Findable, Accessible, Interoperable and Reusable (FAIR) data and information, infrastructure, documentation, training, and quality audit. The list is intended to be used by established as well as new RD registries. Further work includes the development of a toolkit to enable continuous assessment and improvement of their organizational and data quality. Int J Environ Res Public Health. 2018 Aug 3;15(8). pii: E1644. 10.3390/ijerph15081644 1660-4601 1660-4601 International journal of environmental research and public health 30081484 http://hdl.handle.net/20.500.12105/8902 Patient registry Quality Rare diseases Recommendations for Improving the Quality of Rare Disease Registries