21st Workshop, Barcelona: "Sharing Rare Disease Patient Data: Translating Principles into Action"

21st Workshop of the EURORDIS Round Table of Companies

"Sharing Rare Disease Patient Data: Translating Principles into Action"


September 30th, 2014

Barcelona, Spain

21st ERTC WorkshopThe 21st ERTC workshop was the occasion to review and discuss issues around collecting, registering and sharing patient data upstream in the drug development process in order to foster the development of treatments for rare diseases downstream. The need to harmonise and share patient data in order for researchers to make the best use of results was highlighted. Patients expressed both willingness and caution regarding data sharing, particularly genetic data which heightens benefits of research but also risks. They desire active representation in data collection programmes and need to trust the data-sharing network. Finally, this ERTC workshop explored the feasibility of establishing public-private partnerships in patient data collection. It was highlighted how researchers, companies and patient groups have already progressed well in building consensus around guiding and aspiring principles for collecting and sharing patient data to maximise opportunities for improved diagnosis and treatment development.

Participants: 79



Concept paper 




A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases Internacional, é uma iniciativa da EURORDISRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. A RareConnect é uma iniciativa da EURORDIS RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases