Online Questionnaire: Tell your Story!

Dear Participant,

We are pleased that you want to join our campaign to raise awareness of IBD as part of our EU-funded research project, miGut-Health: Personalised blueprint of intestinal health.

We believe IBD is not represented properly in the media, and there might be some public misconceptions. That is why we are launching a campaign where you, the people living with IBD, take centre stage. We invite you to share your experiences and tell us what matters most to you. Our audience includes scientists, researchers, families and friends of people with IBD, and anyone curious to learn more.

In collaboration with our partner patient organisation, EFCCA, we have prepared some questions to spark your insights. If you would like to contribute, please fill in the questionnaire below after carefully reading and agreeing to the privacy policy.

Kindly note that all interviews will be published on the miGut-Health website and our social media channels, LinkedIn and X. You can choose not to share your real name; initials can be used instead. While photos of you help put a face to your story, sharing one is completely optional.

Consent Form l Processing of your personal data within the miGut-Health IBD Community Campaign

To be able to participate in the miGut-Health IBD Community Campaign, we need your consent to process your personal data.

Important Notices

Your consent is voluntary. There are no legal disadvantages if you do not give your consent, but you will not be able to participate in the IBD Community campaign. Your consent can be revoked at any time with effect for the future via e-mail at dataprotection@eurice.eu.

Please note that data on the internet can be accessed worldwide, for example on the project’s website or social media channels, and further use by third parties cannot be ruled out.

I hereby consent to the

Editing and publication of my short profile on the official project website https://www.migut-health.eu/ as part of the “IBD Community” section presenting first-hand experiences with inflammatory bowel diseases. *

Editing and publication of my short profile on the project’s official social media channels (X and LinkedIn) to inform
about inflammatory bowel diseases. *

I confirm that I am of legal age and have full legal capacity. *

I give this consent voluntarily and know that I can revoke it at any time with effect for the future.
I have been provided with the privacy policy on the processing of my personal data.

Questionnaire

Name (optional)

Age

Country of residence

Which IBD disease have you been diagnosed with?

Ulcerative Colitis (UC)

Crohns Disease (CD)

Please upload a high-resolution photo (jpg or png) of yourself here, which will be published alongside your interview. If you prefer not to have your photo published, we will use a generic avatar.

Please choose between 5 and 7 questions to answer.

How much did you know about IBD before your diagnosis?

What is something you wish you had known before you were diagnosed with IBD?

How old were you when you were diagnosed with UC/CD? What was your first reaction to the diagnosis?

Which symptoms did you first experience and which do you still experience? How much of your day-to-day life did they affect then and how much now?

How has IBD impacted your social life?

Do you feel that the people around you know enough about IBD? What should they know more about?

Do you use any eHealth tools or apps to monitor your nutrition, track symptoms, etc.?

What is a common misconception about people with IBD that you encounter?

What are your general experiences with IBD treatments and healthcare professionals?

What kind of support or resources have you found most helpful in managing your IBD?

What would be your advice for someone who has been recently diagnosed with IBD?