Interested in joining our new patient advisory group (PAG)?
We are inviting people with experience of living with Inflammatory Bowel Diseases (IBD), or people who are caring for or supporting someone with IBD, to join our newly formed patient advisory group or ‘PAG’.
How you can help
Traditionally, a significant amount of our work is about supporting IBD clinical teams in collecting and analysing health data; but as we mature we want to ensure that we involve people with IBD, and those who support children or adults with these lifelong conditions in our ongoing development.
You can help us with your experience as an expert on what it is like living with IBD
The purpose of the PAG is to contribute the voices of people with IBD to the activities and ongoing development of the IBD Registry.
In this way, members of the PAG will represent the wider community of people with IBD; a role we recognise as increasingly valuable.
How to become involved in our PAG
If you are a patient, or someone who supports or cares for a person with IBD, and would like to join the new PAG, please complete our online application form.
This should take around five minutes on average. Please let us know if you need any help (including any request for large print forms or similar).
Before you apply, please read the supporting documents.
- Terms of Reference – this is the formal description of the Group
- Guidance and FAQ – these provide further details and an explanation about how the Group will work
We estimate that there will be two to four meetings per year, and that the time required per meeting will be about two hours. Under current circumstances we will be holding meetings by video conference. We understand that your time is valuable, and we will use it wisely.
We hope that you are excited by the prospect of being involved and we look forward to hearing from you.
The closing date for applications is the 8th June 2020.
How to be involved more generally
If you are interested in learning more about the IBD Registry, but do not wish to join the Group then please do have a look at our newsletter section.
If you have any questions, please contact us at email@example.com or call in office hours on 020 3393 3969.
IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.
Our Registered Address is 3 St Andrews Place, Regent’s Park, London NW1 4LB. VAT Number 291683766.