Participant Information Sheet

Why are we carrying out this poll?

We want to understand what helps or hinders people living with symptoms of Inflammatory Bowel Disease from getting a diagnosis.

We would like to invite individuals who have been diagnosed with Crohn’s Disease, Ulcerative Colitis, Microscopic Colitis, or Indeterminate Colitis within the last three years to take part in an online survey.

What will I have to do if I want to take part?

You will take part in an online survey. The survey should take no longer than 6 minutes to complete. You can access it here: https://forms.office.com/r/uuN9JuJnns

Will my participation remain confidential?

Yes. The poll is 100% anonymous because it is unable to collect any personal information about you. You will be asked some questions about your age, gender, ethnicity, etc and a few questions about the place where you live, however you do not have to answer these questions if you prefer not to.

What will happen to my data?

The data will be stored securely within Crohn’s & Colitis UK systems, which will only be available to the policy team conducting the poll.

What are the advantages of taking part?

The poll will not benefit you directly in the short term; there is no payment or other direct benefit for taking part. You may find it helpful to share your knowledge and views with the campaigns team to help us improve the support provided to people living with Crohn’s or Colitis prior to their diagnosis. Anticipated benefits of the Earlier Diagnosis programme include discovering knowledge critical to developing and implementing new ways to improve services.

Are there any disadvantages of taking part?

There are no disadvantages to taking part that have been identified. 

Do I have to take part in the poll?

No, your participation is entirely voluntary. If decide to participate, you can end the survey at any point without any consequence. Once you have submitted your response, it will not be possible, due to the confidentiality reasons stated above, to identify your responses to remove them.

What happens now? How do I give my informed consent?

When you click on the survey link, the first section tells you what is expected of you. You will be asked to read this first and then click YES button to indicate your consent and eligibility to participate. Please remember that you are not being asked to represent the views of your agency or organisation, but your own views given on your individual capacity as someone living with Crohn’s or Colitis.

Will I know the results of the poll?

If you would like to receive a summary of our findings, please .

Does Covid-19 affect this research project?

No, Covid-19 should not affect the project. The online nature of the survey means that it meets any future government guidelines with regards to social distancing.

If you have any further questions or wish to talk about the poll in more detail, please do not hesitate to contact Head of Policy and Campaigns, Burcu Borysik burcu.borysik@crohnsandcolitis.org.uk  

Who do I contact if I have any concerns or complaints about my data?

In case of complaints specifically relating to data protection, please contact the Data Protection Lead/Head of Operations, Sarina Jesudason Sarina.Jesudason@crohnsandcolitis.org.uk