P696 First results and information model from the Parelsnoer Institute IBD biobank: a nationwide standardised inflammatory bowel disease collection by all university medical centres in the Netherlands
L. M. Spekhorst*1, 2, F. Imhann1, 2, E. A. M. Festen1, 2, A. A. van Bodegraven3, N. K. H. de Boer3, G. Bouma3, H. H. Fidder4, G. R. A. M. D’Haens5, F. Hoentjen6, D. W. Hommes7, D. J. de Jong6, M. Lowenberg5, A.E. van der Meulen-de Jong7, B. Oldenburg4, M. Pierik8, C.Y. Ponsioen5, P.C. Stokkers9, M. C. Visschedijk1, 2, C. J. van der Woude10, G. Dijkstra1, R. K. Weersma1
1University of Groningen and University Medical Centre Groningen, Department of Gastroenterology and Hepatology, Groningen, Netherlands, 2University of Groningen and University Medical Centre Groningen, Department of Genetics, Groningen, Netherlands, 3VU University Medical Centre, Department of Gastroenterology and Hepatology, Amsterdam, Netherlands, 4University Medical Centre Utrecht, Department of Gastroenterology and Hepatology, Utrecht, Netherlands, 5Amsterdam Medical Centre, Department of Gastroenterology and Hepatology, Amsterdam, Netherlands, 6University Medical Centre St Radboud, Department of Gastroenterology and Hepatology, Nijmegen, Netherlands, 7Leiden University Medical Centre, Department of Gastroenterology and Hepatology, Leiden, Netherlands, 8University Medical Centre Maastricht, Division of Gastroenterology and Hepatology, Maastricht, Netherlands, 9St Lucas Andreas Ziekenhuis, Department of Gastroenterology and Hepatology, Amsterdam, Netherlands, 10Erasmus Medical Centre, Department of Gastroenterology and Hepatology, Rotterdam, Netherlands
Inflammatory bowel disease (IBD) is known for its heterogeneous clinical presentation and disease course. Therefore, large cohorts with extensive phenotypes and standardised collections of biomaterials are required to study the relationship between clinical characteristics and genetic, microbial, and environmental disease risk factors.
The IBD collection (Parel) within Parelsnoer Institute (PSI) was founded to build the infrastructure of a nationwide cohort in which clinical data (IBD-Parelsnoer Information Model) and biomaterials (standard laboratory set, DNA, serum, stool samples) from IBD patients from all 8 university medical centres (UMCs) in the Netherlands are collected in a standardised manner.
At the time of the data freeze for this first report, 3 388 patients (2 118 CD; 1 190 UC; 59% female) had been included in the database. At inclusion CD disease localization according to the Montreal classification was ileal in 23%; colonic in 31%; ileocolonic in 46%; and perianal in 27% of patients. For UC, disease localization was proctitis in 8%, left sided in 36% and pancolitis in 56% of patients. In our IBD cohort, 53% of the IBD patients were employed, and 25% of the IBD patients were entitled to welfare because of incapacity for work. Extra-intestinal manifestations were significantly more present in CD patients than in UC patients (ocular manifestations [p = 0.020], skin manifestations [p < 0.001], and musculoskeletal manifestations [p < 0.001]). UC patients who smoked at time of inclusion had extra-intestinal manifestations more often than non-smokers (musculoskeletal manifestations (p = 0.033), arthropathy (p = 0.002), and ocular manifestations (p < 0.001). Disease activity scores showed that 67% of CD patients and 74% of UC patients were in remission at inclusion. During the disease course 72% of CD and 57% of UC patients had used or were using immunomodulators, and 49% (CD) and 20% (UC) had used or were using a biological. At inclusion 34% of IBD patients in our cohort had undergone surgery.
We here provide a nationwide standardised framework and uniform information model for the collection of IBD data and biomaterials. In this abstract we describe the disease characteristics of our nationwide university medical centres based PSI IBD cohort. Our data show that UC patients who smoke have a significantly increased risk of developing an EIM compared with non-smoking UC patients. This is a striking finding, as smoking is known to be a protective factor in UC patients and has previously only been reported to aggravate the disease course of CD. Our framework will allow us to integrate clinical phenotypes with multi-omics data to unravel and redefine IBD, predict the disease course, and personalize treatment.