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P165 A global prospective observational study in children and adolescents with paediatric-onset IBD: the PIBD-SETQuality inception cohort

M. A. Aardoom*1, P. Kemos2, F. Ruemmele3, I. Tindemans1, J. N. Samsom1, N. Croft2, L. de Ridder1, PIBD SETQuality Consortium and PIBDnet1

1Erasmus Medical Center – Sophia Children's Hospital, Paediatric Gastroenterology, Rotterdam, The Netherlands, 2Centre for Immunobiology, Blizard Institute, Barts and the London School of Medicine, Queen Mary University of London, Paediatric Gastroenterology, London, UK, 3Université Paris Descartes, Sorbonne Paris Cité, APHP, Hôpital Necker Enfants Malades, Paediatric Gastroenterology, Paris, France


The consequences of paediatric IBD (PIBD), such as growth failure, bowel resection at young age and a lifelong risk of treatment-related adverse events may hugely influence the patient’s further development and quality of life. Unfortunately, we are still not able to predict which patients are at risk of developing a complicated disease course. To investigate this, large prospective international studies withlong-term follow-up are needed. In this first global cohort, we aim to evaluate which patients are at risk based on patient and disease characteristics, immune pathology and environmental factors.


In this international prospective observational study, children and adolescents diagnosed with IBD <18 years are included at disease diagnosis with the intention of up to 20 years follow-up following a visit schedule that is in line with standard PIBD care. Patient and disease characteristics, as well as results of investigations, are collected at baseline and during follow-up. In addition, environmental factors are being assessed. In specific centres with the ability to perform extensive immunological analyses, biomaterial is being collected in therapy naïve patients at baseline and during follow-up.


PIBD patients data from in 14 centres in the UK (UK), The Netherlands (NL), Italy, Israel, and Malaysia are recruiting 12–13 patients per month. Ten extra centres (in 4 new countries) are preparing for their first recruitment with an estimated 19 extra patients per month. Well organised data management and responsive sites led to a completion rate of 76% of the 1700 raised queries. To date 178 PIBD patients have been recruited which equals 18% of the target number. They have a varied ethnicity (69.9% white; 13.9% South Asian; 1,7% South East Asian; 5.2% black; 0.6% hispanic/latino; 8.7% mixed race). Median length of follow-up of these patients is 8.5 months. The median PCDAI and PUCAI scores at baseline are 25 (IQR 15) and 45 (IQR 35) in CD and UC, respectively. Median baseline endoscopy scores showed a median SES-CD score of 10 (IQR 10) and UCEIS of 4 (IQR 2.5). Comparing data between countries show that the use of maintenance therapy is equal with 62% and 61% on an immunomodulator at 6 months follow-up in UK and NL, respectively. Analysis of international and racial differences regarding presenting phenotype, performed diagnostics and induction therapies are ongoing.


As the first global inception cohort including data from European and Asian countries, this will reveal valuable data on standard clinical practice and immune pathology, facilitate comparisons on diagnostic and therapeutic strategies between countries and provide opportunities to compare findings with other national cohorts.