Patient Advisory Group (PAG)

Putting the patient at the centre of what we do

The creation of the Patient Advisory Group (PAG) reflects our commitment to involving people living with inflammatory bowel disease, and those who support children or adults with these lifelong conditions, in the organisations ongoing development.

The purpose of the Patient Advisory Group is to contribute the voices of people with IBD to the activities of the IBD Registry – in particular when deciding its priorities and future developments. Members of the Group:

  • Offer advice and give insight.
  • Ensure there is appropriate patient engagement in its work.
  • Challenge and question.
  • Help promote awareness of the IBD Registry amongst the IBD community and
  • Communicate to others the value of participating in the IBD Registry.

The full Terms of Reference and formal description of the Group can be read here.


How to become involved in our PAG

We currently do not have a vacancy on the PAG.

Members were asked to submit an application and were selected following interview. Members are asked to serve a minimum term of 2 years.

Contact us or be involved more generally

If you have any questions about the work of the PAG, please contact us at or call in office hours on 020 3393 3969.

If you are interested in learning more about the IBD Registry, but do not wish to join the Group then please subscribe to our regular newsletter or follow us on Twitter (@ibdregistry)

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