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Pharmacoepidemiology and pharmacovigilance Resource Database

Provided by European Network of Centres for Pharmacoepidemiology and Pharmacovigilance (ENCepp)

ENCePP

The Resource Database is an electronic index of available EU research organisations, networks and data sources, including patient registries, in the fields of pharmacoepidemiology and pharmacovigilance, and is a key component of the ENCePP web portal. All information contained in this database is provided and maintained by the listed organisations, data providers or registry holders.
The Resource Database includes information on expertise and research experience across Europe and serves as a hub for both researchers and study sponsors seeking to identify organisations and data sets for conducting specific pharmacoepidemiology and pharmacovigilance studies in Europe.
The database is fully searchable and allows the identification of research centres, data sources and patient registries by country, type and other relevant criteria.

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TREAT-NMD Global Registry Network

Provided by TREAT-NMD

TREAT-NMD

The TREAT-NMD Global Registry Network brings together independent neuromuscular diseases (NMD) patient registries from across the world. The federated network currently has 64 registry members (either NMD- or disease-specific), who, together are collecting data on approximately 80,00 NMD patients.

Working together allows registries to provide data on larger groups of patients, to share learning between registries, and benefit from efficiencies in centralised contracting etc. Importantly, registries retain ownership and control of their data.

TREAT-NMD coordinates this activity, and provides research communication support (e.g. to write abstracts, posters, and publications) and facilitates global registry data enquiries and projects (including statistical analysis, contracting and assurance provision).

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