Leading Evidence & Insight

Group of people in a workshop talking around a table.

We hear from thousands of people every month so we know we can tell powerful stories about your lives and what needs to change, backed by facts and statistics. But we also know that we are not reaching every part of our community so cannot reflect the full range of experiences. We are making it our mission to fully understand your experience so we can fight for everyone affected by Crohn’s and Colitis.

Group of people in a workshop talking around a table.

The Evidence and Insight programme will identify gaps in the current knowledge of Crohn’s and Colitis and address them. Our aim is to understand the experiences of all those affected by Crohn’s and Colitis, including those from underserved groups.

By ‘evidence’ we mean facts and information drawn from research, data analysis and evaluation. ‘Insight’ is where evidence is applied in real-life situations to gain more knowledge from people’s lived experiences.

To view a list of tenders currently open for submission as part of the Evidence and Insight programme, click here: Tenders.

Currently we are funding research to strengthen our evidence and insight into areas such as:

  • Who lives with Crohn’s and Colitis in the UK - As you may already know, earlier this year we received the results from a study we commissioned that showed the number of people living with Crohn’s Disease or Ulcerative Colitis in the UK has been vastly underestimated. Read more here. Next, we need to explore in more depth how Crohn’s and Colitis is shaped by factors such as age, gender, ethnicity, location and socioeconomic factors. This work will deepen our understanding of different lived experiences of Crohn’s and Colitis across the UK and lay the foundations for our future work.
  • Earlier diagnosis – We’ve completed an evidence review to give us a better understanding of where and why diagnostic delays occur and what has worked to tackle this in other conditions. We’re also in the process of interviewing a wide range of people who have experienced delays in their diagnosis to delve in more depth into their experiences and identify where barriers have occurred and how these can be overcome.
  • The cost of IBD – We want to know the true cost of IBD to individuals, the NHS and wider society. This project will examine if delays in diagnosis of IBD impacts the costs and the mechanisms behind this.
  • The language of poo - People tend to get very embarrassed when speaking about their bowel movements. It is not something that is part of usual everyday conversation and something people still view as a taboo. We captured insights from a range of people to understand how they talk about poo, pee, and toilets. We were especially interested in understanding the type of language people from different cultures, genders and ages use when discussing bowel movements.
    You can read more about the findings here or view the executive summary of the report here.
  • Improving diversity in research – We’ve recently partnered with ClearView Research to gather evidence that will help us better understand of the barriers members of the Black community face when  getting involved with research.  You can now read the findings of the report and how we're going to be using this to implement change.
  • Which social and economic factors have the biggest impact? - We working on a co-creation project to understand what social and economic factors have the biggest impact on people living with Crohn's and Colitis in the UK, particularly engaging participants from under-reached groups. 

By actively expanding our evidence and insight base, we are leading what is known about Crohn’s and Colitis in the UK.

Understanding diagnostic delays in Crohn’s and Colitis: an evidence review for Crohn’s & Colitis UK

Crohn's & Colitis UK have commissioned an evidence review to develop an understanding of where and why diagnostic delays occur in Crohn’s and Colitis and to gain insights from how delays in diagnosis have been tackled in other comparative diseases which might help to address diagnostic delay issues in IBD.

The full report and an executive summary document are available to download below.

Report: Understanding diagnostic delays in Crohn’s and Colitis: an evidence review for Crohn’s and Colitis UK
Executive Summary: Understanding diagnostic delays in Crohn’s and Colitis: an evidence review for Crohn’s and Colitis UK

Want to get involved in research?

The best quality research happens when people with Crohn's and Colitis are involved, and you can make a difference at every stage of research.


This page has been saved in your personal space. Go to “My Page” to view all saved pages.

Helpline service


We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Signposting you to specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

Live chat

If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

Would you like to save the changes made to this page?