21st Workshop, Barcelona: “Sharing Rare Disease Patient Data: Translating Principles into Action”
September 30th, 2014
The 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.