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