EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD
EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD
EPIRARE_Results_Domenica Taruscio.pdf - Treat-NMD
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<strong>EPIRARE</strong> objectives<br />
General objective<br />
• To build consensus and synergies to address regulatory, ethical and<br />
technical issues associated with the registration of RD patients and to<br />
elaborate possible policy scenarios.<br />
Specific Objectives<br />
• To identify the needs of RD registries and databases in the EU<br />
• To create a platform of tools and services for the registration of RD<br />
patients and to promote data exchange<br />
• To identify key issues to prepare a legal basis<br />
• To agree on the Platform Scope, Governance and long-term<br />
sustainability<br />
• To agree on a Common data set, disease-specific data collection and<br />
data validation<br />
6th TREAT-<strong>NMD</strong> Curators’ & 5th TGDOC Meeting<br />
Saturday and Sunday, 29th-30th September 2012, Istanbul, Turkey
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