title: Inflammatory bowel disease in pediatric patients: Characteristics of newly diagnosed patients from the CEDATA-GPGE Registry.
abstract: BACKGROUND
  Inflammatory bowel disease (IBD) can arise at any age, with peak incidence in adolescence and young adulthood. A registry of pediatric cases of IBD offers the opportunity to document their diagnosis and treatment, with the ultimate aim of improving diagnosis and treatment in the future.
  
  
  METHODS
  In the German-language CEDATA-GPGE registry, 3991 cases of IBD in patients less than 18 years of age were documented from 2004 to 2014. The 1257 patients who were prospectively included in the registry upon diagnosis and whose further course was documented for at least three months were analyzed in two separate groups--under 10 years old, and 10 years and above--with respect to the type and duration of their symptoms until diagnosis, the completeness of the diagnostic evaluation, the disease phenotype, and the initial treatment.
  
  
  RESULTS
  Of the 958 patients for whom full documentation was available, 616 (64.3%) had Crohn's disease (CD), 278 (29%) had ulcerative colitis (UC), 64 (6.7%) had an unclassified IBD, and 23.2% were under 10 years old. The latency to diagnosis was longer for CD than for UC (0.5 versus 0.3 years), regardless of age. 62.5% of the CD patients had ileocolonic involvement, and more than half had involvement of the upper gastrointestinal tract. 71% of the patients with UC had subtotal colitis or pancolitis. Continuous improvement was seen in diagnostic assessment according to published guidelines. For example, in 2004/2005, 69% of patients were evaluated endoscopically with ileocolonoscopy and esophagogastroduodenoscopy; this fraction had risen to nearly 100% by 2013/2014. Similarly, the percentage of patients who underwent a diagnostic evaluation of the small intestine, as recommended, rose from 41.2% to 60.9% over the same period. The most common initial treatments were 5- amino - salicylates (86.8% CD, 100% UC) and glucocorticoids (60.6% CD, 65.6% UC). 32% of the patients with CD received exclusive enteral nutrition therapy.
  
  
  CONCLUSIONS
  Most of these pediatric patients with IBD, whether in the younger or the older age group, had extensive bowel involvement at the time of diagnosis. The registry data imply that improvement in clinical course may be achieved by shortening the time to diagnosis and by closer adherence to the diagnostic and therapeutic guidelines.
authors.forename: Stephan
authors.initials: S
authors.lastname: Buderus
authors.forename: Dietmar
authors.initials: D
authors.lastname: Scholz
authors.forename: Rolf
authors.initials: R
authors.lastname: Behrens
authors.forename: Martin
authors.initials: M
authors.lastname: Classen
authors.forename: Jan
authors.initials: J
authors.lastname: De Laffolie
authors.forename: Klaus-Michael
authors.initials: KM
authors.lastname: Keller
authors.forename: Klaus-Peter
authors.initials: KP
authors.lastname: Zimmer
authors.forename: Sibylle
authors.initials: S
authors.lastname: Koletzko
mesh_terms: D017677:Age Distribution; D000893:Anti-Inflammatory Agents / Q000627:therapeutic use*; D002648:Child; D000067576:Child Health / Q000706:statistics & numerical data; D002675:Child, Preschool; D004035:Diet Therapy / Q000706:statistics & numerical data*; D016099:Endoscopy, Gastrointestinal / Q000706:statistics & numerical data*; D005260:Female; D005858:Germany / Q000453:epidemiology; D005938:Glucocorticoids / Q000627:therapeutic use; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D015212:Inflammatory Bowel Diseases / Q000175:diagnosis* / Q000453:epidemiology / Q000628:therapy*; D008297:Male; D019804:Mesalamine / Q000627:therapeutic use; D015995:Prevalence; D012042:Registries; D018570:Risk Assessment; D017678:Sex Distribution
chemical_list: D000893:Anti-Inflammatory Agents; D005938:Glucocorticoids; D019804:Mesalamine