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The primary source for the dissemination of IDB results at EU level is the public IDB access at the IDB website: https://webgate.ec.europa.eu/idb/
The public IDB access allows for interactive analysis of an aggregated and completely “de-personalised” extract of the original single record data as submitted by the National Data Administrators (NDAs), and does not contain any personal data anymore (“personal data” refers to any information relating to an identified or identifiable natural person; an identifiable person is one who can be identified, directly or indirectly, in particular by reference to an identification number or to one or more factors specific to his or her physical, physiological, mental, economic, cultural or social identity).
For reasons of flexibility of data aggregation and for in-depth studies also the original single record data is stored at DG Sanco. (“Research Access”) Even though the identification of a patient “behind” an IDB record is almost impossible it is still considered personal data (“case data”) and hence subject to respective EU and also national legislation.
DG Sanco has therefore recently issued a data protection policy for the IDB that implements the Data Protection Directive 95/46/EC on the protection of individuals with regard to the processing of personal data.
Basically, the IDB data protection policy restricts the access to single record IDB data to
- the IDB data suppliers
- the head of Public Health Programme Management Unit at the EC,
- the head of Product and Service Safety Unit at the European Commission and
- service providers, that are temporarily linked to the EC by contract
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