Inform Health Soc Care - A practical framework for data management processes and their evaluation in population-based medical registries.

Tópicos

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Resumo

TRODUCTION: We present a framework for data management processes in population-based medical registries. Existing guidelines lack the concreteness we deem necessary for them to be of practical use, especially concerning the establishment of new registries. Therefore, we propose adjustments and concretisations with regard to data quality, data privacy, data security and registry purposes.MATERIALS AND METHODS: First, we separately elaborate on the issues to be included into the framework and present proposals for their improvements. Thereafter, we provide a framework for medical registries based on quasi-standard-operation procedures.RESULTS: The main result is a concise and scientifically based framework that tries to be both broad and concrete. Within that framework, we distinguish between data acquisition, data storage and data presentation as sub-headings. We use the framework to categorise and evaluate the data management processes of a German cancer registry.DISCUSSION: The standardisation of data management processes in medical registries is important to guarantee high quality of the registered data, to enhance the realisation of purposes, to increase efficiency and to enable comparisons between registries. Our framework is destined to show how one central impediment for such standardisations - lack of practicality - can be addressed on scientific grounds.

Resumo Limpo

troduct present framework data manag process populationbas medic registri exist guidelin lack concret deem necessari practic use especi concern establish new registri therefor propos adjust concretis regard data qualiti data privaci data secur registri purposesmateri method first separ elabor issu includ framework present propos improv thereaft provid framework medic registri base quasistandardoper proceduresresult main result concis scientif base framework tri broad concret within framework distinguish data acquisit data storag data present subhead use framework categoris evalu data manag process german cancer registrydiscuss standardis data manag process medic registri import guarante high qualiti regist data enhanc realis purpos increas effici enabl comparison registri framework destin show one central impedi standardis lack practic can address scientif ground

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