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

 

Agenda 

Concept paper 

 

 

 

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases