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- NO
- Thematic: No
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- Thematic: No
- Data Repository European Union, Netherlands Compatibility:Not yet registeredPartners:MRDM, DICA Pediatrics, Biomedical Science, GeneticsMRDM,DICA
The EPSA | ERNICA Registry is to improve the quality of patient care by enabling health care providers to get insight in their outcomes and using the cumulative data from the EPSA registry to conduct scientific research, for example to compare treatments or identify certain risk factors for complications. The EPSA (European Pediatric Surgical Audit) registry contains information on diseases seen in new-born children, like: Hirschsprung’s disease, Congenital Diaphragmatic Hernia, Oesophageal Atresia, Anorectal Malformation, Omphalocele and Gastroschisis. ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies European Reference Networks and aims to pool together disease-specific expertise, knowledge and resources from across Europe to achieve health goals that may otherwise be unachievable in a single country. ERNICA monitors and evaluates its activities in accordance with the ERN-wide monitoring framework of expert healthcare professionals from specialised healthcare providers across Europe. These networks seek to pool together the expertise available across Europe and concentrate knowledge and resources on rare and/or complex diseases. Each ERN focuses on a particular rare disease area with two diagnostic groups: Malformations of the digestive system (oesophageal diseases, intestinal diseases, intestinal failure and gastroenterological diseases) and Malformations of the diaphragm and abdominal wall (Malformations of the diaphragm and Abdominal wall defects) This standard defines the metadata required to insure availability, versioning and interoperability of the EPSA|ERNICA data.
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For further information contact us at helpdesk@openaire.eu - Data Repository Netherlands, United States Compatibility:OpenAIRE Data (funded, referenced datasets)Partners:Utrecht University, Dataverse, Trimbos Institute, University of Groningen, VUA +7 partners Humanities and Social Sciences, Life Sciences, Natural SciencesUtrecht University,Dataverse,Trimbos Institute,University of Groningen,VUA,DANS,Leiden University,LIS,NIOO,4TU.Federation,Universiteit Utrecht, Universiteitsbibliotheek,Maastricht University, University Library
re3data: r3d100011201
OAI-PMH URL: https://dataverse.nl/oaiOnline storage, sharing and registration of research data, during the research period and after its completion. DataverseNL is a shared service provided by participating institutions and DANS.
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This site provides access to the output of the institution. The interface is available in Chinese and English. Some items are not available as full-text.
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re3data: r3d100012775
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For further information contact us at helpdesk@openaire.eu - Data Repository China (People's Republic of), Hong Kong Compatibility:Not yet registeredPartners:LN, Lingnan Uniiversity Hong Kong, Fong Sum WoodLibrary, Lingnan University Hong Kong, Fong Sum WoodLibrary Humanities and Social Sciences, Life Sciences, Natural SciencesLN,Lingnan Uniiversity Hong Kong, Fong Sum WoodLibrary,Lingnan University Hong Kong, Fong Sum WoodLibrary
re3data: r3d100014312
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For further information contact us at helpdesk@openaire.eu - Data Repository Netherlands Compatibility:Not yet registeredPartners:University of Groningen Human Genetics, Biomedical Science, GenotypingUniversity of Groningen
International Dystrophic Epidermolysis Bullosa Patient Registry (DEB Register) provides phenotypic and genotypic information on DEB and the related COL7A1 mutations. The registry is intended to aid in disease diagnosis, genetic counseling, and discovery of novel insights.
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ncRNADrug is an integrated and comprehensive resource that records manually curated and computationally predicted ncRNAs associated with drug resistance, ncRNAs targeted by drugs, as well as potential drug combinations for the treatment of resistant cancer. https://academic.oup.com/nar/advance-article/doi/10.1093/nar/gkad1042/7416364
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For further information contact us at helpdesk@openaire.eu - Data Repository Netherlands, Belgium Compatibility:Not yet registeredPartners:KNMI, EC, EUMETNET GROUPEMENT D INTERET ECONOMIQUE Natural Sciences, Atmospheric Science and Oceanography, Geosciences (including Geography)KNMI,EC,EUMETNET GROUPEMENT D INTERET ECONOMIQUE
re3data: r3d100010055
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This site is a university repository providing access to the publication output of the Technical University of Eindhoven.
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- Data Repository European Union, Netherlands Compatibility:Not yet registeredPartners:MRDM, DICA Pediatrics, Biomedical Science, GeneticsMRDM,DICA
The EPSA | ERNICA Registry is to improve the quality of patient care by enabling health care providers to get insight in their outcomes and using the cumulative data from the EPSA registry to conduct scientific research, for example to compare treatments or identify certain risk factors for complications. The EPSA (European Pediatric Surgical Audit) registry contains information on diseases seen in new-born children, like: Hirschsprung’s disease, Congenital Diaphragmatic Hernia, Oesophageal Atresia, Anorectal Malformation, Omphalocele and Gastroschisis. ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies European Reference Networks and aims to pool together disease-specific expertise, knowledge and resources from across Europe to achieve health goals that may otherwise be unachievable in a single country. ERNICA monitors and evaluates its activities in accordance with the ERN-wide monitoring framework of expert healthcare professionals from specialised healthcare providers across Europe. These networks seek to pool together the expertise available across Europe and concentrate knowledge and resources on rare and/or complex diseases. Each ERN focuses on a particular rare disease area with two diagnostic groups: Malformations of the digestive system (oesophageal diseases, intestinal diseases, intestinal failure and gastroenterological diseases) and Malformations of the diaphragm and abdominal wall (Malformations of the diaphragm and Abdominal wall defects) This standard defines the metadata required to insure availability, versioning and interoperability of the EPSA|ERNICA data.
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For further information contact us at helpdesk@openaire.eu - Data Repository Netherlands, United States Compatibility:OpenAIRE Data (funded, referenced datasets)Partners:Utrecht University, Dataverse, Trimbos Institute, University of Groningen, VUA +7 partners Humanities and Social Sciences, Life Sciences, Natural SciencesUtrecht University,Dataverse,Trimbos Institute,University of Groningen,VUA,DANS,Leiden University,LIS,NIOO,4TU.Federation,Universiteit Utrecht, Universiteitsbibliotheek,Maastricht University, University Library
re3data: r3d100011201
OAI-PMH URL: https://dataverse.nl/oaiOnline storage, sharing and registration of research data, during the research period and after its completion. DataverseNL is a shared service provided by participating institutions and DANS.
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For further information contact us at helpdesk@openaire.eu - Institutional Repository China (People's Republic of) Compatibility:OpenAIRE Basic (DRIVER OA)Partners:Chinese Academy Of Sciences, Institute of Psychology (中国科学院心理研究所)(PSYCH), ChinaChinese Academy Of Sciences, Institute of Psychology (中国科学院心理研究所)(PSYCH), China
This site provides access to the output of the institution. The interface is available in Chinese and English. Some items are not available as full-text.
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International Dystrophic Epidermolysis Bullosa Patient Registry (DEB Register) provides phenotypic and genotypic information on DEB and the related COL7A1 mutations. The registry is intended to aid in disease diagnosis, genetic counseling, and discovery of novel insights.
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ncRNADrug is an integrated and comprehensive resource that records manually curated and computationally predicted ncRNAs associated with drug resistance, ncRNAs targeted by drugs, as well as potential drug combinations for the treatment of resistant cancer. https://academic.oup.com/nar/advance-article/doi/10.1093/nar/gkad1042/7416364
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