5th Workshop, Paris: "Rare Disease Patient Registries: an Essential Tool in the Development of Therapies?"

5th Workshop of the Eurordis Round Table of Companies:

"Rare Disease Patient Registries: an Essential Tool in the Development of Therapies?" 


November 20th, 2006

Paris, France

ERTC    workshopThe main outcome of this successful workshop was that patient registries are indeed an essential tool for rare disease patients and patient groups, to stimulate research on the natural history of their disease and increase the knowledge base, study epidemiology, accelerate product development and improve the management of the disease based on individual and collective medical data. Among the issues discussed were the current lack of registries and tools or technological platforms to share, cost of registries, an economic model to guarantee long-term sustainability, lack of guidelines to improve quality and on ownership, control and use of the data.

Participants: 68

Key feature: a high number of patient groups concerned by rare disease registries attended this workshop


Concept Paper


For ERTC Members only, this document is password protected. If you want to become a member, find out more here or contact Anne-Mary Bodin, Operations Assistant.


A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. 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