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Owner
Italian Institute of Health, Italian Regions
National authority

The Italian National Rare Disease Registry (RNMR), was established by law in 2001 to collect data on rare diseases to improve RD healthcare. In view of the establishment of European Reference Networks, RNMR is providing information on the activity of Centers to be endorsed by the Italian government. The RNMR platform is a web service that is provided to some Italian regions for the inclusion of cases of rare diseases, in accordance with ""Stato Regioni"" agreement of 2007 in which has been defined the variables to be collected and the method of fill out.

In this way the regions can use a dynamic tool that allows real-time monitoring of input cases.

The variables included in the platform have been standardized in compliance with the international standards for coding and classification of Rare Diseases.

All procedures of storage and classification of data, comply with current regulations on privacy and data security of the Italian law.

Italian Insitute of Health is in charge for the activities of survelliance through the develop and the improovment of RNMR platform and National Registries.

This solution gives to the Regions that need the instrument for the data collecting. It simplifes and facilitate the work of Data Collection at local level.

This solution is used by Referall center of Rare Disesase of some Italian Regions like Assessorato della Salute Regione Siciliana              

Technology used:  Windows ASPNET and SQL Server Database      

 

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