Data and ResourcesBelgian Neuromuscular Disease Registryjson Download metadata_BNMDR_2013csv Preview Download Case Report Form of Belgian Neuromuscular Disease Registry (BNMDR) V.4.1html Go to resource Download All FieldValue Modified2019-01-16 Release Date2018-05-30 Identifier4a34b8d6-5ee7-41ef-9278-5a5c0c39012c LicenseCreative Commons Attribution Public Access LevelPublic Protocol Protocol Full title of the projectBelgian Neuromuscular Disease Registry Name or abbreviated title of the project where availableBNMDR Commissioner(s) Organisation (1) that commissioned this project Name of organisation (1)National Institute for Health and Disability Insurance Website(s) of organisation (1)Website Organisation (2) that commissioned this project Name of organisation (2)Patrick Dufrane Source(s) of Monetary or Material Support Organisation providing support Name of organisationNational Institute for Health and Disability Insurance Website(s) of organisationWebsite Governance Governance Is there a Steering / Accompanying committee?Yes Name of Steering/Accompanying Committee (1)Stuurgroep van het Belgian Neuromuscular Disease Registry (BNMDR) Composition of Steering/Accompanying Committee (1)2 representatives from the RIZIV-INAMI, 2 representatives from the WIV-ISP, 1-2 representatives from each reference center for neuromuscular diseases General information Objective of the project Additional informationNo additional information available Scope ScopeEpidemiology Quality of care research Legal basis Type of legal basis Type of legal basisOther Legal documents Full reference of legal documentRevalidatieovereenkomst inzake tenlasteneming door referentiecentra voor patiënten lijdend aan neuromusculaire ziekten. URL to legal documenthttps://www.riziv.fgov.be/care/nl/revalidatie/convention/desorder-locomotor/pdf/agreement02.pdf Design of the project Data transfer frequency Data transfer frequencyYearly Method of data transfer Data transfer method(s)Web application (eg. online registration form, upload) 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 GiverNurses Paramedical professionals Physicians Physiotherapists Specialty of physicians involved (encoding) in the projectNeurology Neuropsychiatry Neurosurgery Type of paramedical professionals involved (encoding) in the projectErgotherapists Informed consent Informed consent Are subjects informed?Yes Do subjects have to give their consent?Yes How do subjects give their consent?Yes 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 Full name committeeCommissie BioMedische Ethiek van University of Leuven Date of decision2009-08-22 Title decisionAvis unique définitif : avis favorable Sectoral Committee National Registry (Privacy Commission) Authorization by the sectorial committee Health / Social affairs of the Privacy CommissionYes Full name committeeSectoral Committee National Project (Privacy Commission) Date of decision2010-11-17 Title decisionBeraadslaging RR nr 42/2010 van 17 november 2010 Nr. DecisionRR 42/2010 Sectoral Committee Health / Social affairs (Privacy Commission) Authorization by the sectorial committee Health / Social affairs of the Privacy CommissionYes Full name committeeSectoral Committee Health / Social affairs (Privacy Commission) Date of decision2010-11-16 Title decisionBeraadslaging nr. 10/062 van 20 juli 2010 met betrekking tot de verwerking van gecodeerde persoonsgegevens door het Scientific Institute of Public Health van de federale overheidsdienst volksgezondheid, veiligheid van de voedselketen en leefmilieu in het kader van het Belgische register van neuromusculaire aandoeningen (BNMDR) Nr. DecisionSCSZ 10/062 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)BNMDR disease classification Data quality Data quality First year for which data is available2008 Procedures for checking and validating the source dataThe online form has data check controls : i.e. data type checks, bounds checks, logical checks. Data compilation processNon relevant. Punctuality for the most recent completed data collection: the data collection was completedLess then 6 months (but more than 1 month) after the communicated deadline Participation rate of the health institutionsVery high (80-100%) Participation rate of the health professionalsVery high (80-100%) Extent of unit non-responseLow (5-9%) Extent of the item non-responseThere is some item non-response (5% to under 15%) Necessity of editing the raw dataThere is a lot of item non-response (15% to under 50%) Extend to which the collected data are comparable across the Belgian regionsComparability across the Belgian regions is restricted to some extend 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 variablesMedium (10-19%) Can records belonging to same entity be matched?Yes, no restriction in time Additional informationPatients without a NISS are not registered. Data storage Data storage Total number of unique records14424 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)?Yes Additional informationNo additional information available Data access Data access Written Data sharing policy?Yes Request data
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