Technical solution for data collection, data safety and data privacy legislation: experiences from the SWEET study: Technical solution for data collection, data safety from the SWEET study
Saved in:
| Title: | Technical solution for data collection, data safety and data privacy legislation: experiences from the SWEET study: Technical solution for data collection, data safety from the SWEET study |
|---|---|
| Authors: | Forsander, Gun, Pellinat, Martin, Volk, Michael, Muller, Markus, Pinelli, Leonardo, Magnen, Agnes, Danne, Thomas, Aschemeier, Barbel, de Beaufort, Carine, SWEET group |
| Source: | Pediatric diabetes, 13(16), 39-48. Denmark (2012). |
| Publisher Information: | Wiley, 2012. |
| Publication Year: | 2012 |
| Subject Terms: | 0301 basic medicine, Endocrinology/legislation & jurisprudence/methods/organization & administration/standards, Multidisciplinaire, généralités & autres [D99] [Sciences de la santé humaine], Adolescent, Databases, Factual, International Cooperation, Models, Biological, Management Information Systems, 03 medical and health sciences, Endocrinology, 0302 clinical medicine, International Cooperation/legislation & jurisprudence, Management Information Systems/legislation & jurisprudence/standards, Diabetes Mellitus, Humans, European Union, Registries, Child, Multidisciplinary, general & others [D99] [Human health sciences], Computer Security, Data Collection, Reference Standards, Registries/standards/statistics & numerical data, 16. Peace & justice, 3. Good health, European Union/organization & administration/statistics & numerical data, Confidentiality |
| Description: | 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.To describe the rationale for- and the technical procedure in the data collection implementation, in the SWEET study.Selected data on all patients treated at SWEET CoR are collected.The SWEET project data collection and management system, consists of modular components for data collection, online data interchange, and a database for statistical analysis.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. |
| Document Type: | Article |
| Language: | English |
| ISSN: | 1399-543X |
| DOI: | 10.1111/j.1399-5448.2012.00911.x |
| Access URL: | https://orbilu.uni.lu/bitstream/10993/26969/1/forsander%20et%20al.%202012%20technical%20solution%20for%20data.pdf https://pubmed.ncbi.nlm.nih.gov/22931223 https://www.ncbi.nlm.nih.gov/pubmed/22931223 https://europepmc.org/article/MED/22931223 http://orbilu.uni.lu/bitstream/10993/26969/1/forsander%20et%20al.%202012%20technical%20solution%20for%20data.pdf http://sweet-project.eu/relaunch/images/Supplement/6Technicalsolution.pdf http://www.visiontree.com/assets/files/pdf/studies-and-abstracts/pedi911_SWEET_VTOC%20Publication.pdf https://www.visiontree.com/assets/files/pdf/studies-and-abstracts/pedi911_SWEET_VTOC%20Publication.pdf http://orbilu.uni.lu/handle/10993/26969 |
| Rights: | Wiley TDM CC BY NC SA |
| Accession Number: | edsair.doi.dedup.....8254a97c5cad86f7ba92c3f13643c3e2 |
| Database: | OpenAIRE |
Nájsť tento článok vo Web of Science | Abstract: | 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.To describe the rationale for- and the technical procedure in the data collection implementation, in the SWEET study.Selected data on all patients treated at SWEET CoR are collected.The SWEET project data collection and management system, consists of modular components for data collection, online data interchange, and a database for statistical analysis.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. |
|---|---|
| ISSN: | 1399543X |
| DOI: | 10.1111/j.1399-5448.2012.00911.x |