Rare disease registries classification and characterization: a data mining approach.

Background: The European Commission and Patients Organizations identify rare disease registries (RDRs) as strategic instruments to develop research and improve knowledge in the field of rare diseases. Interoperability between RDRs is needed for research activities, validation of therapeutic treatments, and public health actions. Sharing and comparing information requires a uniform and standardized way of data collection, so levels of interconnection between RDRs with similar aims and/or nature of data should be identified.

The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration.

Background: The European Union acknowledges the relevance of registries as key instruments for developing rare disease (RD) clinical research, improving patient care and health service (HS) planning and funded the EPIRARE project to improve standardization and data comparability among patient registries and to support new registries and data collections.

Methods: A reference list of patient registry-based indicators has been prepared building on the work of previous EU projects and on the platform stakeholders' information needs resulting from the EPIRARE surveys and consultations. The variables necessary to compute these indicators have been analysed for their scope and use and then organized in data domains.

[Influenza: waiting for pandemic].

Pandemic flu is a sudden invasive infection, caused by the diffusion to humans of a viral strain characterized by the presence of one or more new surface proteins. Pandemic influenza prevention is among health priorities for WHO, that introduced a world surveillance programme and published Guidelines for preparing national pandemic plans. Following Guidelines, Italy prepared a plan considering human and veterinary health activities, among which the use of vaccines and antiviral drugs, and informative and formative projects.