The Registry is approved in the UK as a research database that archives non-personally identifiable information collected as part of routine clinical practice and requires consent for inclusion in the Registry. A fresh application for ethics and data governance approvals in the UK occurs every 5 years and the Registry was last approved in 2019. Relevant documents that may be required for local approvals are provided here. Patient Information Sheets are available in several languages on the PIS link.
Last Revised: 21st July 2023