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 TERMINÉ 
Despite examples of excellent practice, rare disease (RD) research is still mainly fragmented by data and disease types. Individual efforts have little interoperability and almost no systematic connection between detailed clinical and genetic information, biomaterial availability or research/trial datasets. By developing robust mechanisms and standards for linking and exploiting these data, RD-Con ...
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 TERMINÉ 

Recognising Adverse Drug Reactions (WEB-RADR)

Date du début: 1 sept. 2014, Date de fin: 31 août 2017,

WEB-RADR is a consortium of leading experts in pharmacovigilance from regulatory agencies, research, academia and patient support groups. Together with EFPIA partners our aims will be to set policy & guidance and deliver robust information technology tools to address the potential for the reporting of adverse drug reactions (ADRs) through mobile applications and the recognition of drug safety sign ...
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 TERMINÉ 

European Patients' Academy on Therapeutic Innovation (EUPATI)

Date du début: 1 févr. 2012, Date de fin: 31 janv. 2017,

"The proposed project ""European Patients' Academy on Therapeutic Innovation"" (EUPATI) contributes to IMI’s goal of raising patients’ awareness and participation in pharmaceutical R&D. This patient-led academy will provide scientifically reliable, objective, comprehensive information to patients on pharmaceutical R&D. It will increase the capacity of well-informed patients to be effective advocat ...
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 33

 TERMINÉ 
RARE-Bestpractices will develop a sustainable networking platform, supporting the collection of standardized and validated data and efficient exchange of knowledge and reliable information on rare diseases (RD).RD are characterized by low prevalence (EU – 5:10000 persons). There are more than 5000, overall affecting about 30 million citizens of all ages in the EU. RD are often life-threatening and ...
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 16