Rough patient data on patients diagnosed with LCH Data and ResourcesBelgian Langerhans cell histiocytosis registryjson Download FieldValue Modified2020-07-21 Release Date2018-07-04 Identifier8708aefa-8aab-4ec4-9760-d92afe2b41c4 LicenseCreative Commons Attribution Public Access LevelPublic Protocol Protocol Full title of the projectBelgian Langerhans cell histiocytosis registry Name or abbreviated title of the project where availableBelgian LCH registry Source typePatient registries Sponsor(s) Primary organization that oversees implementation of study and is responsible for data analysis. Name of organisationUniversity Hospitals Leuven [Pediatric Oncology] Commissioner(s) Organisation that commissioned this project Name of organisationUniversity Hospitals Leuven Website(s) of organisationWebsite Governance Governance Is there a Steering / Accompanying committee?No General information General information Project descriptionRough patient data on patients diagnosed with LCH Therapeutic area DiseaseCancer Skin and Connective Tissue Diseases Objective of the project Additional informationinformation to patient organisation Scope ScopeEpidemiology Legal basis Type of legal basis Type of legal basisUnknown Design of the project Data transfer frequency Data transfer frequencyAd hoc (event based) Method of data transfer Data transfer method(s)E-mail (secured) Sites involved in the project Type of site(s) Care ProviderGeneral hospitals Health professionals involved (encoding) in the project Health professionals involved (encoding) in the project Care GiverPhysicians Specialty of physicians involved (encoding) in the projectPaediatrics Informed consent Informed consent Are subjects informed?Not applicable How are subjects informed?Not applicable Do subjects have to give their consent?Not applicable How do subjects give their consent?Not applicable Is there a procedure to provide subjects the ability to consult their registered information?No Is there a procedure to provide subjects the ability to correct their registered information?No Additional informationNo additional information available Review Ethics Committee Authorization by an Ethics Committee?Yes Sectoral Committee National Registry (Privacy Commission) Authorization by the sectorial committee Health / Social affairs of the Privacy CommissionNo Sectoral Committee Health / Social affairs (Privacy Commission) Authorization by the sectorial committee Health / Social affairs of the Privacy CommissionNo Sectoral Committee Crossroads Bank of Enterprises (Privacy Commission) Authorization by the sectorial committee Crossroads Bank of Enterprises of the Privacy Commission (Y/N)No Data dictionary Classifications and Terminology NameOther Other classification system(s)LCH staging according to Histiocyte Society Data quality Data quality First year for which data is available2005 Procedures for checking and validating the source dataThe rough patient data come from the Belgian Cancer Registry Data compilation processThe rough patient data come from the Belgian Cancer Registry and are put into a secured database. The collection is now stopped as all patients are now in principle included into LCH-IV clinical protocol. Punctuality for the most recent completed data collection: the data collection was completedNot applicable Participation rate of the health institutionsNo information available Participation rate of the health professionalsNo information available Extent of unit non-responseNo information available Extent of the item non-responseThere is nearly no item non-response Necessity of editing the raw dataNot applicable Extend to which the collected data are comparable across the Belgian regionsNot applicable Comparable or reconcilable over timeThere are no restrictions concerning comparability over time Additional informationNo additional information available Extent of problems with the misclassification of statistical units for their key variablesVery low or none (0-4%) Can records belonging to same entity be matched?Not applicable Additional informationNo additional information available Data storage Data storage Total number of unique records200 The organisation in charge of storage of the collected data, is certified as being compliant with the international standards on information security management system (eg. ISO27001)?No information available Additional informationI have now no access; so the "10" and "200" is an estimate. Data access Data access Written Data sharing policy?No Request data
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