PINPOINT Study
Research type
Research Study
Full title
The PINPOINT study - The Prospective Incidence of Paediatric-Onset Inflammatory bowel disease in the United Kingdom.
IRAS ID
281336
Contact name
Paul Henderson
Contact email
Sponsor organisation
NHS Lothian
Duration of Study in the UK
1 years, 2 months, 31 days
Research summary
Research Summary
There has been an increase in children newly diagnosed with paediatric inflammatory bowel disease (PIBD) around the world. This study will aim to record each such diagnosis in the UK in children under the age of 16 over a 15-month period, to determine the number of cases identified across the participating sites and to highlight any particular areas of high or low prevalence. This will in turn allow the NHS and IBD charities to provide better care. This improvement in care will be driven by a better understanding of what resources are needed and how they can be used in a more beneficial way.
The study will also create a group of paediatric IBD patients who can be followed up long term. During the initial consent for the study patients and their families will be asked if they can be contacted at future dates for ongoing work, and also if routine health care data can be linked in larger studies as part of the long term follow up. This future work will be done following completion of this project and with additional funding. This group of patients will allow research into what happens to patients with IBD throughout their life (for example who uses certain medicines or requires surgery). It will also help us to understand how patients use the NHS (for example how many outpatient appointments or admissions are required) and therefore the overall cost of each patient’s care.
Summary of Results
We found that in total 2324 children and young people (<16yrs old) were diagnosed with inflammatory bowel disease between June 2021 and December 2022 across the entire UK (12.5/100,000/yr). Overall 44% (1053 patients) provided full written consent for ongoing research and contact with the remainder of patients providing mandatory anonymous data only. This equated to around 125 new diagnoses each month. We also showed that 6100 children and young people are living with IBD in the UK in 2023 (49.3/100,000). Only 5.6% of children where diagnosed under 6yrs of age and inflammatory bowel disease was more common in boys. The average age at diagnosis was 12.2yrs. Crohn's disease remained the most common sub-type but the proportion of children with UC had increased, possibly due to population ethnicity differences. We demonstrated that there was twice the expected rate of inflammatory bowel disease in those with an Asian background. Overall the incidence (number of new cases) of paediatric inflammatory bowel disease has risen more than 2-fold since the turn of the millennium.
REC name
West of Scotland REC 4
REC reference
20/WS/0119
Date of REC Opinion
27 Oct 2020
REC opinion
Further Information Favourable Opinion