118 lines
9.9 KiB
XML
118 lines
9.9 KiB
XML
<?xml version="1.0" encoding="utf-8"?>
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<!--re3data.org Schema for the Description of Research Data Repositories. Version 2.2, December 2014. doi:10.2312/re3.006-->
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<r3d:re3data xmlns:r3d="http://www.re3data.org/schema/2-2" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:schemaLocation="http://www.re3data.org/schema/2-2 http://schema.re3data.org/2-2/re3dataV2-2.xsd">
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<r3d:repository>
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<r3d:re3data.orgIdentifier>r3d100012251</r3d:re3data.orgIdentifier>
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<r3d:repositoryName language="eng">RAMEDIS</r3d:repositoryName>
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<r3d:additionalName language="eng">Rare Metabolic Diseases Database</r3d:additionalName>
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<r3d:repositoryURL>https://agbi.techfak.uni-bielefeld.de/ramedis/htdocs/eng/index.php</r3d:repositoryURL>
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<r3d:description language="eng">The RAMEDIS system is a platform independent, web-based information system for rare metabolic diseases based on filed case reports. It was developed in close cooperation with clinical partners to allow them to collect information on rare metabolic diseases with extensive details, e.g. about occurring symptoms, laboratory findings, therapy and molecular data.</r3d:description>
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<r3d:repositoryContact>https://agbi.techfak.uni-bielefeld.de/ramedis/htdocs/eng/staff.php</r3d:repositoryContact>
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<r3d:type>disciplinary</r3d:type>
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<r3d:size updated="2016-11-28">818 patients have been published with 93 different genetic metabolic diseases</r3d:size>
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<r3d:startDate>2008</r3d:startDate>
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<r3d:endDate></r3d:endDate>
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<r3d:repositoryLanguage>eng</r3d:repositoryLanguage>
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<r3d:subject subjectScheme="DFG">2 Life Sciences</r3d:subject>
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<r3d:subject subjectScheme="DFG">201 Basic Biological and Medical Research</r3d:subject>
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<r3d:subject subjectScheme="DFG">20101 Biochemistry</r3d:subject>
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<r3d:subject subjectScheme="DFG">205 Medicine</r3d:subject>
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<r3d:subject subjectScheme="DFG">20515 Gastroenterology, Metabolism</r3d:subject>
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<r3d:subject subjectScheme="DFG">21 Biology</r3d:subject>
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<r3d:subject subjectScheme="DFG">22 Medicine</r3d:subject>
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<r3d:missionStatementURL>https://agbi.techfak.uni-bielefeld.de/ramedis/htdocs/eng/index.php</r3d:missionStatementURL>
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<r3d:contentType contentTypeScheme="parse">Raw data</r3d:contentType>
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<r3d:contentType contentTypeScheme="parse">Scientific and statistical data formats</r3d:contentType>
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<r3d:contentType contentTypeScheme="parse">Standard office documents</r3d:contentType>
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<r3d:contentType contentTypeScheme="parse">other</r3d:contentType>
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<r3d:providerType>dataProvider</r3d:providerType>
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<r3d:keyword>biochemistry</r3d:keyword>
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<r3d:keyword>disease</r3d:keyword>
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<r3d:keyword>genetics</r3d:keyword>
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<r3d:keyword>laboratory findings</r3d:keyword>
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<r3d:keyword>metabolic findings</r3d:keyword>
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<r3d:keyword>metabolic symtoms</r3d:keyword>
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<r3d:keyword>metabolism</r3d:keyword>
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<r3d:keyword>symptoms laboratory findings</r3d:keyword>
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<r3d:keyword>therapy</r3d:keyword>
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<r3d:institution>
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<r3d:institutionName language="deu">Bundesministerium für Bildung und Forschung</r3d:institutionName>
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<r3d:institutionAdditionalName language="deu">BMBF</r3d:institutionAdditionalName>
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<r3d:institutionAdditionalName language="eng">Federal Ministry of Education and Research</r3d:institutionAdditionalName>
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<r3d:institutionCountry>DEU</r3d:institutionCountry>
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<r3d:responsibilityType>funding</r3d:responsibilityType>
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<r3d:institutionType>non-profit</r3d:institutionType>
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<r3d:institutionURL>https://www.bmbf.de/bmbf/de/home/home_node.html</r3d:institutionURL>
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<r3d:institutionIdentifier>ROR:04pz7b180</r3d:institutionIdentifier>
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<r3d:responsibilityStartDate></r3d:responsibilityStartDate>
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<r3d:responsibilityEndDate></r3d:responsibilityEndDate>
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<r3d:institutionContact>https://www.bmbf.de/bmbf/de/service/kontakt/nachricht-an-das-bmbf.html</r3d:institutionContact>
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</r3d:institution>
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<r3d:institution>
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<r3d:institutionName language="deu">Universität Bielefeld, Informationsmanagement in der Biotechnologie</r3d:institutionName>
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<r3d:institutionAdditionalName language="deu">IMBio</r3d:institutionAdditionalName>
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<r3d:institutionCountry>DEU</r3d:institutionCountry>
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<r3d:responsibilityType>funding</r3d:responsibilityType>
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<r3d:institutionType>non-profit</r3d:institutionType>
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<r3d:institutionURL>https://imbio.de/#/</r3d:institutionURL>
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<r3d:responsibilityStartDate></r3d:responsibilityStartDate>
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<r3d:responsibilityEndDate></r3d:responsibilityEndDate>
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<r3d:institutionContact>bjsommer@techfak.uni-bielefeld.de</r3d:institutionContact>
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<r3d:institutionContact>hofestae@techfak.uni-bielefeld.de</r3d:institutionContact>
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</r3d:institution>
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<r3d:institution>
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<r3d:institutionName language="deu">Universität Bielefeld, Technische Fakultät, AG Bioinformatik</r3d:institutionName>
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<r3d:institutionAdditionalName language="eng">Bielefeld University, Bioinformatics and Medical Informatics Department</r3d:institutionAdditionalName>
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<r3d:institutionCountry>DEU</r3d:institutionCountry>
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<r3d:responsibilityType>general</r3d:responsibilityType>
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<r3d:responsibilityType>technical</r3d:responsibilityType>
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<r3d:institutionType>non-profit</r3d:institutionType>
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<r3d:institutionURL>https://www.techfak.uni-bielefeld.de/ags/bi/</r3d:institutionURL>
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<r3d:responsibilityStartDate></r3d:responsibilityStartDate>
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<r3d:responsibilityEndDate></r3d:responsibilityEndDate>
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<r3d:institutionContact>https://www.techfak.uni-bielefeld.de/ags/bi/contact/index.shtml</r3d:institutionContact>
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</r3d:institution>
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<r3d:institution>
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<r3d:institutionName language="deu">Universität Tübingen, Klinik für Kinder- und Jugendmedizin</r3d:institutionName>
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<r3d:institutionAdditionalName language="eng">University of Tuebingen, School of Medicine, Childrens Hospital of Reutlingen</r3d:institutionAdditionalName>
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<r3d:institutionCountry>DEU</r3d:institutionCountry>
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<r3d:responsibilityType>general</r3d:responsibilityType>
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<r3d:institutionType>non-profit</r3d:institutionType>
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<r3d:institutionURL>https://www.medizin.uni-tuebingen.de/de/das-klinikum/einrichtungen/kliniken/kinderklinik</r3d:institutionURL>
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<r3d:institutionIdentifier>ROR:03esvmb28</r3d:institutionIdentifier>
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<r3d:responsibilityStartDate></r3d:responsibilityStartDate>
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<r3d:responsibilityEndDate></r3d:responsibilityEndDate>
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<r3d:institutionContact>service@med.uni-tuebingen.de</r3d:institutionContact>
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</r3d:institution>
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<r3d:databaseAccess>
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<r3d:databaseAccessType>open</r3d:databaseAccessType>
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</r3d:databaseAccess>
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<r3d:dataAccess>
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<r3d:dataAccessType>open</r3d:dataAccessType>
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</r3d:dataAccess>
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<r3d:dataAccess>
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<r3d:dataAccessType>restricted</r3d:dataAccessType>
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<r3d:dataAccessRestriction>registration</r3d:dataAccessRestriction>
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</r3d:dataAccess>
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<r3d:dataLicense>
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<r3d:dataLicenseName>Copyrights</r3d:dataLicenseName>
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<r3d:dataLicenseURL>https://agbi.techfak.uni-bielefeld.de/ramedis/htdocs/eng/staff.php</r3d:dataLicenseURL>
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</r3d:dataLicense>
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<r3d:dataUpload>
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<r3d:dataUploadType>restricted</r3d:dataUploadType>
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<r3d:dataUploadRestriction>other</r3d:dataUploadRestriction>
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<r3d:dataUploadRestriction>registration</r3d:dataUploadRestriction>
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</r3d:dataUpload>
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<r3d:software>
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<r3d:softwareName>unknown</r3d:softwareName>
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</r3d:software>
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<r3d:versioning>yes</r3d:versioning>
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<r3d:pidSystem>none</r3d:pidSystem>
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<r3d:citationGuidelineURL>https://agbi.techfak.uni-bielefeld.de/ramedis/htdocs/eng/index.php</r3d:citationGuidelineURL>
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<r3d:enhancedPublication>unknown</r3d:enhancedPublication>
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<r3d:qualityManagement>unknown</r3d:qualityManagement>
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<r3d:remarks></r3d:remarks>
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<r3d:entryDate>2016-11-25</r3d:entryDate>
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<r3d:lastUpdate>2022-04-04</r3d:lastUpdate>
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</r3d:repository>
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</r3d:re3data> |