Résumé :
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Communication n° 119 Use of databases (DB) for managing neuromuscular diseases (NMD) data is an impressive tool for physicians and researchers. We have developed a DB on an Oracle platform. Oracle has a solid architecture witch is only limited by the operating system (OS) and contrast to 4Gb for Microsoft Access DB. Oracle is a multi-OS compatible and includes powerful tools like data mining, data warehousing and for web application development. Oracle is also more secure and more stable than other majors DBMS. For security, this database is located on the Québec Health Department secure intranet and communications between client and server is secured via 128-bits encryption. This intranet is secured from the internet by high-end firewalls and VLAN. With this secure intranet, clinics around province can communicate with database. Each clinical center can store their nominative information in a separate directory not accessible by others clinics for data confidentiality. All patient data including familial, clinical, and genetic data, as well as molecular data can be stored on the DB. Furthermore, it is possible to automatically generate pedigree via Cyrillic 2 software, to perform statistical analysis or to geographically localize NMD mutations or diseases on a map of province of Quebec using Push'n'see software. The data are easily and directly inserted in database via e-forms filled with a TabletPC witch recognizes human writing. It is the best tested solution by his higher recognition accuracy compared with expensive paper intelligent character recognition software such as Teleform. This DB is also used for the management of the available human biological material in the different centers of the province of Quebec. This data base is an unique plateform for the study of neuromuscular diseases and could be also used for the management of data of several other genetic disorders. This work was supported by AFM and RMGA (Réseau de Médecine Génétique Appliquée du Québec)
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