Following the recent announcement of the IBD Registry Closure we are pleased to confirm that the Royal College of Physicians (RCP) has agreed to act as interim steward for safeguarding the data. This means that our data assets, including personal data, will be securely transferred to the RCP. The RCP will also become the new Data Controller at this point, and as such, responsible for the data.
The RCP is one of our founder organisations and has an extensive experience of clinical audit and health database management, as well as excellent Data Security Standards and Cyber Essentials Certification. The first national IBD audits were hosted by the RCP, before transitioning to the Registry in 2017. They are registered with the ICO, and their privacy policy can be found here.
The IBD Registry has collected a valuable set of data assets for the purpose of improving the care and treatments that people with IBD receive, supporting research, and increasing the information available about IBD. We believe the RCP is an ideal option as an interim safe haven, to allow the time needed to find the best fits for our data and tools, to maximise the legacy of the Registry’s work.
As interim data steward, the RCP is holding the dataset on a closed and inactive basis, with no data processing taking place. As such, there is no ongoing or regular processing of personal data planned at the RCP after the closure of the Registry.
We hold health data related to IBD, contact details, and consent details. We also hold administrative personal data, such as staff records that must be retained by law.
If you think the Registry holds your personal data, you may wish to object to this data transfer and withdraw your data. To find out how to do this, and to view more information about the Registry’s closure, please visit our updated FAQs. Please do contact the IBD Registry team on [email protected] if you have any other questions.
UPDATE: The IBD Registry is closing current activities by Easter 2024, and is in discussions through Spring 2024 for transition to an NHS organisation. Please use [email protected] for clinical or industry enquiries, and [email protected] for public and patient enquiries
