title: Technical solution for data collection, data safety and data privacy legislation: experiences from the SWEET study.
abstract: BACKGROUND
  One of the most important tasks of the SWEET study is benchmarking the data collected. Information on the occurrence of the disease of diabetes, the treatment, and their outcomes in children from the different member states of European Union (EU) is crucial. How the collection of data is realized is essential, concerning both the technical issues and the results. The creation of SWEET Centers of Reference (CoR), all over Europe will be facilitated by the access to safe data collection, where legal aspects and privacy are ascertained.
  
  
  OBJECTIVE
  To describe the rationale for- and the technical procedure in the data collection implementation, in the SWEET study.
  
  
  METHODS
  Selected data on all patients treated at SWEET CoR are collected.
  
  
  METHODS
  The SWEET project data collection and management system, consists of modular components for data collection, online data interchange, and a database for statistical analysis.
  
  
  CONCLUSIONS
  The SWEET study and the organization of CoR aims for the goal of offering an updated, secure, and continuous evaluation of diabetes treatment regimens for all children with diabetes in Europe. To support this goal, an appropriate and secure data management system as described in this paper has been created.
authors.affiliation: Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sweden. gun.forsander@vgregion.se
authors.forename: Gun
authors.initials: G
authors.lastname: Forsander
authors.forename: Martin
authors.initials: M
authors.lastname: Pellinat
authors.forename: Michael
authors.initials: M
authors.lastname: Volk
authors.forename: Markus
authors.initials: M
authors.lastname: Muller
authors.forename: Leonardo
authors.initials: L
authors.lastname: Pinelli
authors.forename: Agnes
authors.initials: A
authors.lastname: Magnen
authors.forename: Thomas
authors.initials: T
authors.lastname: Danne
authors.forename: Bärbel
authors.initials: B
authors.lastname: Aschemeier
authors.forename: Carine
authors.initials: C
authors.lastname: de Beaufort
mesh_terms: D000293:Adolescent; D002648:Child; D016494:Computer Security / Q000331:legislation & jurisprudence* / Q000592:standards; D003219:Confidentiality / Q000331:legislation & jurisprudence* / Q000592:standards; D003625:Data Collection / Q000295:instrumentation / Q000331:legislation & jurisprudence / Q000379:methods / Q000592:standards; D016208:Databases, Factual / Q000331:legislation & jurisprudence / Q000592:standards; D003920:Diabetes Mellitus / Q000453:epidemiology* / Q000628:therapy; D004704:Endocrinology / Q000331:legislation & jurisprudence / Q000379:methods / Q000458:organization & administration / Q000592:standards; D005062:European Union / Q000458:organization & administration / Q000706:statistics & numerical data; D006801:Humans; D007391:International Cooperation / Q000331:legislation & jurisprudence; D008331:Management Information Systems / Q000331:legislation & jurisprudence / Q000592:standards; D008954:Models, Biological; D012015:Reference Standards; D012042:Registries / Q000592:standards / Q000706:statistics & numerical data