Original ArticleChildhood Onset Inflammatory Bowel Disease: Predictors of Delayed Diagnosis from the CEDATA German-Language Pediatric Inflammatory Bowel Disease Registry
Section snippets
Methods
The analysis was based on cases from the pediatric IBD registry, CEDATA-GPGE, as available in August 2009. This registry was founded in 2004 by pediatric gastroenterologists in Germany and Austria and is run by the Society of Pediatric Gastroenterology and Nutrition (GPGE) of these two countries. It includes children and adolescents with a confirmed diagnosis of Crohn’s disease, ulcerative colitis, or unclassified colitis before age 18 years, from specialized IBD centers across Germany and
Results
As of August 2009, 2604 children and adolescents were registered in CEDATA from 53 centres, excluding centers and cases from Saxony (n = 482). Of the CEDATA cases, 168 (6%) were excluded because of missing values for relevant variables (age, sex, type of disease, onset of symptoms, time of diagnosis). Overall, 2436 cases were available for analysis (Table I). For subanalyses in patients with Crohn’s disease, 1456 patients were included. Information on disease location was available for 1154
Discussion
Median time to diagnosis of IBD in CEDATA-GPGE compared favorably with most previously reported data. For those with a symptom onset between 2004 and 2007, 50% of all CEDATA children received the diagnosis within 4 months. Twenty-five percent, however, still wait 8 months or longer before the diagnosis is made and specific treatment can be initiated. Comparable data in the literature vary considerably. Many studies still report delays in the upper range, approaching 1 year for Crohn’s disease.10
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Cited by (0)
Supported by Bild hilft e.V. EIN HERZ FÜR KINDER, Hamburg; Falk Foundation, Freiburg; SHS Gesellschaft für klinische Ernährung mbH, Heilbronn; Society of Pediatric Gastroenterology and Nutrition (GPGE). The authors declare no conflicts of interest.
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List of members of the CEDATA-GPGE Study Group available at www.jpeds.com (Appendix).