title: Disease outcome of inflammatory bowel disease patients: general outline of a Europe-wide population-based 10-year clinical follow-up study.
abstract: OBJECTIVE
  To give a general outline of a 10-year clinical follow-up study of a population-based European cohort of inflammatory bowel disease (IBD) patients and to present the first results in terms of clinical outcome parameters and risk factors.
  
  
  METHODS
  A population-based cohort of newly, prospectively, diagnosed cases was initiated between 1991 and 1993. The 2201 patients with IBD (706 had Crohn's disease (CD), 1379 had ulcerative colitis (UC) and 116 had indeterminate colitis) originated from 20 different areas in 11 different European countries and Israel. For the 10-year follow-up of this cohort, electronic data-collecting instruments were made available through an Internet-based website. Data concerning vital status, disease activity, medication use, surgical events, cancer, pregnancy, fertility, quality of life and health-care costs were gathered. A blood sample was obtained from patients and controls to perform genotypic characterization.
  
  
  RESULTS
  Thirteen centres from eight European countries and Israel participated. In 958 (316 CD and 642 UC) out of a total of 1505 IBD patients (64%) from these 13 centres, a complete dataset was obtained at follow-up. Even though an increased mortality risk was observed in CD patients 10 years after diagnosis, a benign disease course was observed in this patient group in terms of disease recurrence. A correlation between ASCA and CARD15 variants in CD patients and complicated disease course was observed. A north-south gradient was observed regarding colectomy rates in UC patients. Direct costs were found to be highest in the first year after diagnosis and greater in CD patients than in UC patients, with marked differences between participating countries.
  
  
  CONCLUSIONS
  This 10-year clinical follow-up study of a population-based European cohort of IBD patients provides updated information on disease outcome of these patient groups.
authors.affiliation: Department of Gastroenterology and Hepatology, University Hospital Maastricht, Maastricht, The Netherlands.
authors.forename: Frank L
authors.initials: FL
authors.lastname: Wolters
authors.forename: Maurice G
authors.initials: MG
authors.lastname: Russel
authors.forename: Jildou
authors.initials: J
authors.lastname: Sijbrandij
authors.forename: Leo J
authors.initials: LJ
authors.lastname: Schouten
authors.forename: Selwyn
authors.initials: S
authors.lastname: Odes
authors.forename: Lene
authors.initials: L
authors.lastname: Riis
authors.forename: Pia
authors.initials: P
authors.lastname: Munkholm
authors.forename: Ebbe
authors.initials: E
authors.lastname: Langholz
authors.forename: Paolo
authors.initials: P
authors.lastname: Bodini
authors.forename: Colm
authors.initials: C
authors.lastname: O'Morain
authors.forename: Kostas
authors.initials: K
authors.lastname: Katsanos
authors.forename: Epameinondas
authors.initials: E
authors.lastname: Tsianos
authors.forename: Severine
authors.initials: S
authors.lastname: Vermeire
authors.forename: Gilbert
authors.initials: G
authors.lastname: Van Zeijl
authors.forename: Charles
authors.initials: C
authors.lastname: Limonard
authors.forename: Ole
authors.initials: O
authors.lastname: Hoie
authors.forename: Morten
authors.initials: M
authors.lastname: Vatn
authors.forename: Bjørn
authors.initials: B
authors.lastname: Moum
authors.forename: Reinhold W
authors.initials: RW
authors.lastname: Stockbrügger
mesh_terms: D000328:Adult; D001185:Artificial Intelligence; D003082:Colectomy; D003093:Colitis, Ulcerative / Q000191:economics / Q000453:epidemiology* / Q000235:genetics / Q000601:surgery; D003142:Communication; D003424:Crohn Disease / Q000191:economics / Q000453:epidemiology* / Q000235:genetics / Q000601:surgery; D005060:Europe / Q000453:epidemiology; D005260:Female; D005500:Follow-Up Studies; D005838:Genotype; D017048:Health Care Costs; D006801:Humans; D020407:Internet; D007557:Israel / Q000453:epidemiology; D008297:Male; D053473:Nod2 Signaling Adaptor Protein / Q000235:genetics; D010641:Phenotype; D010817:Physician-Patient Relations; D011110:Polymorphism, Genetic; D011446:Prospective Studies; D012008:Recurrence; D012307:Risk Factors
chemical_list: C429018:NOD2 protein, human; D053473:Nod2 Signaling Adaptor Protein