Privacy Statement


The IBD Registry understands that your privacy is important to you and that you care about how your personal data is used and shared. We respect and value the privacy of everyone and will only collect and use personal data in ways that are described here, and in a manner that is consistent with our obligations and your rights under the law.

Overview of the types of information we collect and why

We collect personal information for the reasons below. To find out full details of how we collect your information, how we use it, how we keep it safe, our lawful basis for holding and your rights, please follow any of the links below that apply to you:

  • As a visitor to our website or recipient of our newsletters, we collect information about you to manage our communications with you. You can find more here
  • If you are a patient, we may collect information within the Registry about your Inflammatory Bowel Disease to contribute to improving patient care and treatment, enable research and improve knowledge about IBD. The details of how we protect your information are in our Patient Privacy Policy. Details of how we use your information are in our Information for Patients Leaflet and its Large Text version.
  • If you are a member of the public applying to join our Patient Advisory Group (PAG), we collect information from you as part of the application process. Further information in our Privacy Notice for PAG here here
  • If you are applying for a job with us, we collect information during the candidate recruitment process, and after the recruitment process has ended. More information here
  • If you are an employee, we collect information about you to enter into and fulfil a contract of employment with you and to meet relevant legal obligations under employment law or other legislation.  Policy available internally.
  • If you are a clinician or staff member in a hospital where the Registry is being used, or in contact with us about using it, we collect information about you to enable us to manage our communications with you most effectively. You can find out more here
  • If you are any other commercial or business user, including the NHS, we collect information about you to manage our communications with you most effectively. You can find out more here

Information About Us

We are a company limited by guarantee registered in England under company number 11197749, whose registered address is 3 St Andrews Place, Regent’s Park, London NW1 4LB.  Our VAT number is: 291683766 (this is our registered office; see below for our office address)

We are a not-for-profit organisation, wholly owned by three joint members – the Royal College of Physicians, The British Society of Gastroenterology and Crohn’s and Colitis UK.

We act as the Data Controller for the personal data that you submit to us and protect that data in accordance with all relevant laws.  We are registered with the ICO (Information Commissioner’s Office).  Our ICO Registration Number is: ZA334069

How to Contact Us

Our office address is: Suite 9, Epsom Workhub, Epsom Square
6-7 Derby Square
Epsom, Surrey
KT19 8AG

For general enquiries, please contact us on or by calling us on 020 3393 3639.

Our Data Protection Officer is Adam Spinks, who can be contacted by email at or by post to The DPO at the office address given above.


At the IBD Registry, we are committed to both protecting your personal information and being transparent about what we do with it.

We will use your personal information in accordance with all applicable laws concerning the protection of personal information.

Our Privacy Statement details our use of your personal information, for patients, for job seekers, for employees, for other contacts and for website users.

No surprises

We work to the principle of no surprises: that we will not to do anything with your information you wouldn’t reasonably expect.

We’ve tried to set out on our website all that we do.  If you think something is missing, or that we haven’t been clear enough about something, then let us know and we’ll try to put it right.

IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.