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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases