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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 - Data Repository Italy Compatibility:Not yet registeredPartners:Bologna Biocomputing Group, University of Bologna, Italy Human Genetics, Pathology, Gene functional annotationBologna Biocomputing Group, University of Bologna, Italy
MultifacetedProtDB is an integrated and manually curated database providing a comprehensive collection of multifunctional UniProt/SwissProt human proteins.
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For further information contact us at helpdesk@openaire.eu - Data Repository Belgium Compatibility:Not yet registeredPartners:Switch Laboratory Life Science, GO-term enrichment data, protein-folding chaperone bindingSwitch Laboratory
SNPeffect is a database for phenotyping human single nucleotide polymorphisms (SNPs). SNPeffect primarily focuses on the molecular characterization and annotation of disease and polymorphism variants in the human proteome. Further, SNPeffect holds per-variant annotations on functional sites, structural features and post-translational modification.
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For further information contact us at helpdesk@openaire.eu - Data Repository Belgium Compatibility:Not yet registeredPartners:ARIADNE ArchaeologyARIADNE
ARIADNE is a research infrastructure for archaeology. Its main objective is to support research, learning and teaching by enabling access to digital resources and innovative new services. It does this by maintaining a catalogue of digital datasets, by promoting best practices in the management and use of digital data in archaeology, by offering training and advice, and by supporting the development of innovative new services for archaeology.
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For further information contact us at helpdesk@openaire.eu - Institutional Repository Italy Compatibility:OpenAIRE Basic (DRIVER OA)Partners:UNIBO MultidisciplinaryUNIBOOAI-PMH URL: http://amsdottorato.unibo.it/cgi/oai2
This site provides access to the outputs of the doctoral students of this institution. Users may set up Atom and RSS feeds to be alerted to new content. The interface is available in Italian.
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For further information contact us at helpdesk@openaire.eu - Data Repository Italy Compatibility:OpenAIRE Data (funded, referenced datasets)Partners:UNIPD Engineering Sciences, Natural Sciences, Life SciencesUNIPDOAI-PMH URL: https://researchdata.cab.unipd.it/cgi/oai2
Research Data Unipd supports research produced by members of the University of Padova. The service aims to facilitate data discovery, data sharing, and reuse as required by funding institutions (eg. European Commission).
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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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For further information contact us at helpdesk@openaire.eu - Data Repository European Union, Belgium, France, Denmark Compatibility:Not yet registeredPartners:FP7, EC, ESA, EEA Life Sciences, Agriculture, Forestry, Horticulture and Veterinary Medicine, Ecology of Agricultural LandscapesFP7,EC,ESA,EEA
re3data: r3d100011057
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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 - Data Repository Italy Compatibility:Not yet registeredPartners:Bologna Biocomputing Group, University of Bologna, Italy Human Genetics, Pathology, Gene functional annotationBologna Biocomputing Group, University of Bologna, Italy
MultifacetedProtDB is an integrated and manually curated database providing a comprehensive collection of multifunctional UniProt/SwissProt human proteins.
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For further information contact us at helpdesk@openaire.eu - Data Repository Belgium Compatibility:Not yet registeredPartners:Switch Laboratory Life Science, GO-term enrichment data, protein-folding chaperone bindingSwitch Laboratory
SNPeffect is a database for phenotyping human single nucleotide polymorphisms (SNPs). SNPeffect primarily focuses on the molecular characterization and annotation of disease and polymorphism variants in the human proteome. Further, SNPeffect holds per-variant annotations on functional sites, structural features and post-translational modification.
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For further information contact us at helpdesk@openaire.eu - Data Repository Belgium Compatibility:Not yet registeredPartners:ARIADNE ArchaeologyARIADNE
ARIADNE is a research infrastructure for archaeology. Its main objective is to support research, learning and teaching by enabling access to digital resources and innovative new services. It does this by maintaining a catalogue of digital datasets, by promoting best practices in the management and use of digital data in archaeology, by offering training and advice, and by supporting the development of innovative new services for archaeology.
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For further information contact us at helpdesk@openaire.eu - Institutional Repository Italy Compatibility:OpenAIRE Basic (DRIVER OA)Partners:UNIBO MultidisciplinaryUNIBOOAI-PMH URL: http://amsdottorato.unibo.it/cgi/oai2
This site provides access to the outputs of the doctoral students of this institution. Users may set up Atom and RSS feeds to be alerted to new content. The interface is available in Italian.
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For further information contact us at helpdesk@openaire.eu - Data Repository Italy Compatibility:OpenAIRE Data (funded, referenced datasets)Partners:UNIPD Engineering Sciences, Natural Sciences, Life SciencesUNIPDOAI-PMH URL: https://researchdata.cab.unipd.it/cgi/oai2
Research Data Unipd supports research produced by members of the University of Padova. The service aims to facilitate data discovery, data sharing, and reuse as required by funding institutions (eg. European Commission).
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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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For further information contact us at helpdesk@openaire.eu - Data Repository European Union, Belgium, France, Denmark Compatibility:Not yet registeredPartners:FP7, EC, ESA, EEA Life Sciences, Agriculture, Forestry, Horticulture and Veterinary Medicine, Ecology of Agricultural LandscapesFP7,EC,ESA,EEA
re3data: r3d100011057
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