New research to give full picture of Crohn’s and Colitis across the UK

20 February 2020

Today, Crohn’s & Colitis UK and Coeliac UK announce a joint research project looking into the epidemiology of Crohn’s Disease, Ulcerative Colitis, dermatitis herpetiformis, and coeliac disease. 

Epidemiology is the study of how often conditions occur in different groups of people and why. It’s important because a full of picture of Crohn’s and Colitis can help us push for high quality care across the UK, support people to manage their condition and drive world-class research.

This £70,000 project will be carried out at the University of Nottingham to establish the latest numbers of people with the conditions and better understand how they were diagnosed. Researchers will produce an accurate picture of just how many people there are with Crohn’s or Colitis in the UK. Right now, we understand over 300,000 people are living with the conditions, but the real number could be much higher, with current estimates putting it closer to 500,000. To do this, they will use the Clinical Practice Research Datalink (CPRD), which holds patient healthcare records from GPs.

Results will also provide information on age, gender, ethnicity, socioeconomic position, and where people live, as well as whether those with the conditions were previously diagnosed with Irritable Bowel Syndrome (IBS). Understanding these details is crucial for helping us understand the causes of these conditions and their impact on the people living with them.

This work is essential as, for the first time, it we will give us a comprehensive UK-wide picture of the number of people living with Crohn’s or Colitis, the number of people being newly diagnosed each year, and how this is changing over time. An understanding of how these conditions vary by age, gender, ethnicity, socioeconomic position and geographical area is vital to help us target our research agenda, support services and campaigns on the people who most need these, and will highlight potential areas for improvements in the quality of care and better health outcomes.

Helen Terry
Director of Research at Crohn’s & Colitis UK

Dr Heidi Urwin, Coeliac UK Research Manager said: “This is the third time Coeliac UK has funded epidemiology research which is essential to the charity for evaluating the number of people in the UK who are diagnosed and the impact of our campaign work. This time we have requested further breakdown of figures including, amongst others, the prevalence of children diagnosed by age, on a yearly basis to 18 years, split for geographical region in England and for Wales, Scotland and Northern Ireland. This is vital information to underpin our ongoing campaigns and this year’s focus on children.”

Announcement of results will be shared later this year, with the study due to complete at the start of 2021.

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