{"status":"OK","data":{"id":383522,"identifier":"LEWTBK","persistentUrl":"https://doi.org/10.34894/LEWTBK","protocol":"doi","authority":"10.34894","separator":"/","publisher":"DataverseNL","publicationDate":"2023-10-19","storageIdentifier":"surf://10.34894/LEWTBK","effectiveDatasetFileCountLimit":10000,"datasetFileUploadsAvailable":9998,"datasetType":"dataset","locks":[],"latestVersion":{"id":25446,"datasetId":383522,"datasetPersistentId":"doi:10.34894/LEWTBK","datasetType":"dataset","storageIdentifier":"surf://10.34894/LEWTBK","versionNumber":1,"internalVersionNumber":12,"versionMinorNumber":0,"versionState":"RELEASED","latestVersionPublishingState":"RELEASED","deaccessionLink":"","lastUpdateTime":"2023-10-19T07:00:43Z","releaseTime":"2023-10-19T07:00:43Z","createTime":"2023-10-16T08:30:26Z","publicationDate":"2023-10-19","citationDate":"2023-10-19","effectiveDatasetFileCountLimit":10000,"datasetFileUploadsAvailable":9998,"termsOfUse":"The standard Data Sharing Agreement (DSA) of the UMC Utrecht must be signed without adjustments. This DSA is in compliance with Dutch law. No costs are involved.","confidentialityDeclaration":"no","specialPermissions":"To obtain access to the data, a <a href=\"https://www.umcutrecht.nl/en/data-request-form-umc-utrecht\">request form</a> has to be completed. In addition to a completed request form, a  Data Sharing Agreement (DSA) in line with GDPR regulations and/or a Research Collaboration Agreement (RCA) should be signed before data is shared. Only data requests in line with the Terms of Use will be taken into consideration. ","restrictions":"See Data Sharing Agreement.","citationRequirements":"See Data Sharing Agreement.","conditions":"To access and use the dataset please read the Terms of Use and the Terms of Access.","disclaimer":"See Data Sharing Agreement.","termsOfAccess":"The data is not available for download directly via DataverseNL. Data is available on request by completing the <a href=\"https://www.umcutrecht.nl/en/data-request-form-umc-utrecht\">request form</a>. Only data requests in line with the Terms of Use will be taken into consideration. In addition to a completed request form, the Data Sharing Agreement (DSA) in line with GDPR regulations and/or the Research Collaboration Agreement (RCA) should be signed before data is shared. If a data request is approved, the data will be delivered in a safe and secure manner. By signing the DSA and/or RCA and accessing the Materials, the recipient represents his/her acceptance of the Terms of Use.  ","availabilityStatus":"The data is not available for download directly via DataverseNL but is available on request if the request is compliant with the Terms of Access. ","contactForAccess":"Please fill out the <a href=\"https://www.umcutrecht.nl/en/data-request-form-umc-utrecht\">request form</a>.","fileAccessRequest":true,"metadataBlocks":{"citation":{"displayName":"Citation Metadata","name":"citation","fields":[{"typeName":"title","multiple":false,"typeClass":"primitive","value":"Replication Data for: Long-term monitoring of fatty acid oxidation defects - Results from a MetabERN survey"},{"typeName":"author","multiple":true,"typeClass":"compound","value":[{"authorName":{"typeName":"authorName","multiple":false,"typeClass":"primitive","value":"Marit Schwantje"},"authorAffiliation":{"typeName":"authorAffiliation","multiple":false,"typeClass":"primitive","value":"UMC Utrecht"},"authorIdentifierScheme":{"typeName":"authorIdentifierScheme","multiple":false,"typeClass":"controlledVocabulary","value":"ORCID"},"authorIdentifier":{"typeName":"authorIdentifier","multiple":false,"typeClass":"primitive","value":"0000-0003-4775-1760"}}]},{"typeName":"datasetContact","multiple":true,"typeClass":"compound","value":[{"datasetContactName":{"typeName":"datasetContactName","multiple":false,"typeClass":"primitive","value":"data management"},"datasetContactAffiliation":{"typeName":"datasetContactAffiliation","multiple":false,"typeClass":"primitive","value":"UMC Utrecht"}},{"datasetContactName":{"typeName":"datasetContactName","multiple":false,"typeClass":"primitive","value":"Marit Schwantje"},"datasetContactAffiliation":{"typeName":"datasetContactAffiliation","multiple":false,"typeClass":"primitive","value":"UMC Utrecht"}},{"datasetContactName":{"typeName":"datasetContactName","multiple":false,"typeClass":"primitive","value":"Sabine Fuchs"},"datasetContactAffiliation":{"typeName":"datasetContactAffiliation","multiple":false,"typeClass":"primitive","value":"UMC Utrecht"}}]},{"typeName":"dsDescription","multiple":true,"typeClass":"compound","value":[{"dsDescriptionValue":{"typeName":"dsDescriptionValue","multiple":false,"typeClass":"primitive","value":"Implementation of long-chain fatty acid oxidation defects (LCFAOD) in newborn screening (NBS) programs allows for pre-symptomatic diagnosis and treatment. The long-term natural history of NBS LCFAOD patients is largely unknown and may differ from clinically diagnosed pre-NBS patients. This complicates long-term monitoring of LCFAOD and may cause high monitoring variability. To gain insight in current clinical practice, we performed a web-based questionnaire among all metabolic members of the European Reference Network for Hereditary Metabolic Disorders (MetabERN). Here, the questionnaire and answers per respondent are reported."},"dsDescriptionDate":{"typeName":"dsDescriptionDate","multiple":false,"typeClass":"primitive","value":"2023-10-16"}}]},{"typeName":"subject","multiple":true,"typeClass":"controlledVocabulary","value":["Medicine, Health and Life Sciences"]},{"typeName":"keyword","multiple":true,"typeClass":"compound","value":[{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"long-chain fatty acid oxidation defects"}},{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"long-term monitoring"}},{"keywordValue":{"typeName":"keywordValue","multiple":false,"typeClass":"primitive","value":"questionnaire study"}}]},{"typeName":"depositor","multiple":false,"typeClass":"primitive","value":"Schwantje, Marit"},{"typeName":"dateOfDeposit","multiple":false,"typeClass":"primitive","value":"2023-10-16"}]},"dansDataVaultMetadata":{"displayName":"Data Vault Metadata","name":"dansDataVaultMetadata","fields":[{"typeName":"dansDataversePid","multiple":false,"typeClass":"primitive","value":"doi:10.34894/LEWTBK"},{"typeName":"dansDataversePidVersion","multiple":false,"typeClass":"primitive","value":"1.0"},{"typeName":"dansBagId","multiple":false,"typeClass":"primitive","value":"urn:uuid:4937594a-f028-48b1-871e-560521f1b4bf"},{"typeName":"dansNbn","multiple":false,"typeClass":"primitive","value":"urn:nbn:nl:ui:13-76beeb6b-7ad5-4b71-a28d-71dceb64e076"}]}},"files":[{"description":"Raw data: Answers per respondent","label":"Data_Responses_Longterm_monitoring_lcFAOD.csv","restricted":true,"version":2,"datasetVersionId":25446,"dataFile":{"id":383525,"persistentId":"","filename":"Data_Responses_Longterm_monitoring_lcFAOD.csv","contentType":"text/csv","friendlyType":"Comma Separated Values","filesize":69464,"description":"Raw data: Answers per respondent","storageIdentifier":"surf://store:18b37a11b1f-46593e486021","rootDataFileId":-1,"checksum":{"type":"SHA-1","value":"fb0f4ff7d5b6e46fb51e100f3e909028c88aef89"},"tabularData":false,"creationDate":"2023-10-16","publicationDate":"2023-10-19","lastUpdateTime":"2023-10-19T07:00:43Z","fileAccessRequest":true}},{"description":"Overview of the questions included in the questionnaire","label":"Metadata_questions_longterm_monitoring_lcFAOD.pdf","restricted":false,"version":1,"datasetVersionId":25446,"dataFile":{"id":383524,"persistentId":"","filename":"Metadata_questions_longterm_monitoring_lcFAOD.pdf","contentType":"application/pdf","friendlyType":"Adobe PDF","filesize":130269,"description":"Overview of the questions included in the questionnaire","storageIdentifier":"surf://store:18b3796c78f-42162c05a3f3","rootDataFileId":-1,"checksum":{"type":"SHA-1","value":"58c2b8f9a54dc2366ddc5c4dea92bd0c5cd250a9"},"tabularData":false,"creationDate":"2023-10-16","publicationDate":"2023-10-19","lastUpdateTime":"2023-10-19T07:00:43Z","fileAccessRequest":true}}]}}}