Rare Conditions: Research and Data Registries

In this film, a paediatric endocrinologist explains the role of data registries in enabling knowledge-sharing and the development of effective health solutions for people living with rare conditions. 00:00 - Introduction to registries 00:34 - Different types of registries 01:39 - Using the data 02:16 - Access to data 03:04 - Registry consent requirements 03:57 - The importance of registries