Rare Conditions: Research and Data Registries @PSDScotland

Uploaded October 2025 | Updated September 2026, 1 week ago

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

Rare Conditions: Research and Data Registries

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