For further information on the network’s objectives and activities please see About Us
At the core of ENCePP is the publicly available Database of Research Resources providing free access for study sponsors and investigators to details of research organisations and data sources in the field of pharmacoepidemiology and pharmacovigilance. The database comprises three components: research centres, networks and data sources, including patient registries. All information contained in the database is entered and maintained by the research organisations, data providers and/or registry holders themselves.
This inventory is an electronic resource of data sources and patients registries available to research in pharmacoepidemiology and pharmacovigilance. The inventory is accessible to the general public. It serves as a resource for researchers and potential study funders seeking to identify data sources and patients registries they would consider suitable to answer specific research questions.
The European Medicines Agency’s (EMA) Patient Registries Initiative aims to expand the use of patient registries “by introducing and supporting a more systematic and standardised approach to their contribution to the benefit-risk evaluation of medicines”. In this context, EMA has initiated an inventory of patient registries available through the ENCePP resources database aimed at facilitating the interaction between stakeholders and existing patient registries.
Patient registries not yet included are invited to enter their details in the Inventory. Guidance on how to upload and search for information on patient registries is provided in the document “ENCePP Resource Database – Inventory of Patient Registries”.
Adding a data source or patient registry to the database does not equate to joining ENCePP. If you are interested in joining ENCePP please click here.
Note also that inclusion in the Inventory does not imply granting access to a data source or patient registry.
In addition, adding a data source or patient registry does not affect in any way registration of existing ENCePP partners.
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