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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Provided by TREAT-NMD

TREAT-NMD

TREAT-NMD can advise if a registry is available for a particular neuromuscular condition (contact email) and a list of registries by disease can be found here. The data in registries can be entered by patients themselves, by their doctor or by a combination of the two.
Registries can:
Identify participants for clinical trials
Help develop care standards, to help improve the care people receive
Support specific research questions
Provide information for doctors and scientists to learn more about neuromuscular diseases
Represent a link between patients and the research community, providing the opportunity for people to receive information directly relevant to their condition (for example, through newsletters)

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