PIBD data linkage exploration of risk factors and adverse consequences
Research type
Research Study
Full title
The PIES (Paediatric-onset Inflammatory Bowel Disease Epidemiology in Scotland) study: data linkage exploration of perinatal risk factors and long-term adverse consequences.
IRAS ID
242960
Contact name
Christopher Burgess
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
1 years, 4 months, 30 days
Research summary
Paediatric-onset inflammatory bowel disease (PIBD; IBD diagnosed <16 years of age) comprises Crohn’s disease (CD), ulcerative colitis (UC) and IBD unclassified (IBDU). The incidence of PIBD in Scotland is the highest in the United Kingdom and one of the highest worldwide. Epidemiological data for greater than 4 decades confirms a 5-fold increase in CD incidence in Scottish children, with marked geographical differences and socio-economic associations. The latest Scottish paediatric incidence data on IBD from 1996 onwards has not been validated and does not include any children aged 13-16 years who may have been seen exclusively in adult IBD (medical and surgical) services. It is therefore likely to underestimate the actual numbers of affected children. \n\nThis current project aims to continue work by Dr Emma Armitage and Professor Anne Ferguson between the Western General Hospital and Royal Hospital for Sick Children, Edinburgh who previously validated the incidence of PIBD in Scotland from 1981-1995. The data to be collected now from 1996-2017 will be used to calculate robust and up-to-date incidence figures for children in Scotland with IBD and will then be used to further knowledge on whether the true incidence rates of IBD in children are rising even faster than previously thought given the previously missed cases that were never managed in established paediatric clinical services. Collection and validation of robust population-based epidemiological data will then allow data-linkage to investigate and explore potential environmental risk factors contributing to the increasing incidence of PIBD as well as the consequences of having a diagnosis of PIBD.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
18/LO/1062
Date of REC Opinion
12 Jun 2018
REC opinion
Favourable Opinion