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Kinder- und Jugendmedizin 2011; 11(05): 283-288
DOI: 10.1055/s-0038-1629158
Gastroenterologie
Schattauer GmbH

Patientenregister als epidemiologische Werkzeuge

Das Register für chronisch entzündliche Darmerkrankungen CEDATA-GPGEPatient registries as epidemiologic toolsThe inflammatory bowel disease registry CEDATA-GPGE
D. Scholz
1   Zentrum für Kinderheilkunde und Jugendmedizin, Justus-Liebig-Universität Gießen
,
R. Behrens
2   Klinik für Neugeborene, Kinder und Jugendliche, Klinikum Nürnberg Süd
,
M. Claßen
3   Klinik für Kinder- und Jugendmedizin, Klinikum Links der Weser Bremen; für die Arbeitsgruppe CEDATA der Gesellschaft für Pädiatrische Gastroenterologie und Ernährung (GPGE) e. V.
› Author Affiliations
Further Information

Publication History

Eingereicht am:19 July 2011

angenommen am:03 August 2011

Publication Date:
31 January 2018 (online)

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Zusammenfassung

Mit der Zunahme der Inzidenz chronisch entzündlicher Darmerkrankungen (CED), insbesondere des Morbus Crohn im Kindes- und Jugendalter, richtete sich die Aufmerksamkeit der Wissenschaft auf die Merkmale der pädiatrischen CED. V. a. längere Krankheitszeiten, Schmerzen und Untergewicht behindern die körperliche, seelische und schulische Entwick-lung. Kinder- und Jugendärzte sollten mit den Besonderheiten des Krankheitsverlaufs und den Komplikationen der CED in der Pädiatrie vertraut sein, um den Betroffenen zu helfen, ihr Entwicklungspotenzial voll auszuschöpfen. In westlichen Ländern entstanden Patientenregister, die aufgrund institutioneller Bindungen meist nur einen Teil der Population erfassen. Mit dem sächsischen Kinder-CED-Register wurde 2000 ein flächendeckendes Dokumentationssystem für den Verlauf der CED im Kindesalter etabliert. Auf dieser Erfahrung aufbauend wurde 2004 von der Gesellschaft für pädiatrische Gastroenterologie und Ernährung (GPGE) das deutschsprachige Register CEDATA ins Leben gerufen, das mittlerweile die weltweit größte Zahl von Kindern und Jugendlichen mit CED in einer Kohorte vereint.

Summary

With the incidence of inflammatory bowel disease (IBD), especially Crohn’s disease of childhood and adolescence, on the rise, science has focused attention on the characteristics of paediatric IBD. Longer periods of illness, pain, underweight and more impair the physical, emotional, and intellectual development. Paediatricians should be familiar with the natural course and complications of pediatric IBD in order to assist their patients in reaching their full potential. Patient registries have been set up in many western countries, but due to institutional constraints often cover only a part of the population. In 2000 the Saxonian Children-IBD-registry has been instituted, a state-wide documentation system for the course of IBD in pediatric patients. Building on this expertise in 2004 the German-Language Society of Paediatric Gastroenterology and Nutrition (GPGE) established the registry CE-DATA that meanwhile included the largest cohort of children and adolescents with IBD worldwide.

Schlüsselwörter

Chronisch entzündliche Darmerkrankung - Patientenregister - Epidemiologie - Versorgungsqualität

Keywords

Inflammatory bowel disease - patient registry - epidemiology - quality of care
 

  • Literatur

  • 1 Koletzko S, Uhlig HH. Hygienehypothese: Schlüssel zur Ätiologie und Pathogenese von CED?. Monatsschr Kinderheilkd 2010; 158: 759-765.
    CrossrefGoogle Scholar
  • 2 Shivananda S, Lennard-Jones J, Logan R. et al Incidence of inflammatory bowel disease across Europe: is there a difference between north and south? Results of the European Collaborative Study on Inflammatory Bowel Disease (EC-IBD). Gut 1996; 39: 690-697.
    CrossrefPubMedGoogle Scholar
  • 3 Buderus S. Epidemiologie und klinische Besonderheiten der pädiatrischen CED. Monatsschr Kinderheilkd 2010; 158: 745-751.
    CrossrefGoogle Scholar
  • 4 Heyman MB. et al Children with early-onset inflammatory bowel disease (IBD): analysis of a pediatric IBD consortium registry. J Pediatr 2000; 146: 35-40.
    Google Scholar
  • 5 Keljo DJ. et al Course and treatment of perianal disease in children newly diagnosed with Crohn's disease. Inflamm Bowel Dis 2009; 15: 383-387.
    CrossrefPubMedGoogle Scholar
  • 6 Gupta N. et al Incidence of structuring and penetrating complications of Crohn's disease diagnosed in pediatric patients. Inflamm Bowel Dis 2010; 16: 638-644.
    CrossrefPubMedGoogle Scholar
  • 7 Dotson JL. et al Extraintestinal manifestations of pediatric inflammatory bowel disease and their relation to disease type and severity. J Pediatr Gastroenterol Nutr 2010; 51: 140-145.
    CrossrefPubMedGoogle Scholar
  • 8 Kugathasan S. et al Epidemiologic and clinical characteristics of children with newly diagnosed inflammatory bowel disease in Wisconsin: a statewide population-based study. J Pediatr 2003; 143: 525-531.
    CrossrefPubMedGoogle Scholar
  • 9 McLeod RS. et al Preliminary report on the Mount Sinai Hospital Inflammatory Bowel Disease Genetics Project. Diseases of the Colon & Rectum 1997; 40: 553-557.
    CrossrefPubMedGoogle Scholar
  • 10 Rejler M, Spångéus A, Tholstrup J, Andersson-Gäre B. Improved population-based care: Implementing patient-and demand-directed care for inflammatory bowel disease and evaluating the redesign with a population-based registry. Qual Manag Health Care 2007; 16: 38-50.
    CrossrefPubMedGoogle Scholar
  • 11 Lichtenstein GR. et al Serious infections and mortality in association with therapies for Crohn's disease: TREAT registry. Clin Gastroenterol Hepatol 2006; 4: 621-630.
    CrossrefPubMedGoogle Scholar
  • 12 Bansal P, Sonnenberg A. Risk factors of colorectal cancer in inflammatory bowel disease. Am J Gastroenterol 1996; 91: 44-48.
    Google Scholar
  • 13 Weng X, Liu L, Barcellos LF. et al Clustering of inflammatory bowel disease with immune mediated diseases among members of a northern californiamanaged care organization. Am J Gastroenterol 2007; 102: 1429-1435.
    CrossrefPubMedGoogle Scholar
  • 14 Askling J. et al Colorectal cancer rates among firstdegree relatives of patients with inflammatory bowel disease: a population-based cohort study. Lancet 2001; 357: 262-266.
    CrossrefPubMedGoogle Scholar
  • 15 van der Zaag-Loonen HJ, Casparie M, Taminiau JA. et al The incidence of pediatric inflammatory bowel disease in the Netherlands: 1999-2001. J Pediatr Gastroenterol Nutr 2004; 38: 302-307.
    CrossrefPubMedGoogle Scholar
  • 16 Magro F. et al Inflammatory bowel disease: a patient's and caregiver's perspective. Digestive Diseases Sciences 2009; 54: 2671-2679.
    CrossrefPubMedGoogle Scholar
  • 17 Meléndez JD, Larregui Y, Vázquez JM. et al Medication profiles of patients in the University of Puerto Rico inflammatory bowel disease registry. Puerto Rico Health Sciences Journal 2011; 30: 3-8.
    PubMedGoogle Scholar
  • 18 Farrell RJ, Ang Y, Kileen P. et al Increased incidence of non-Hodgkin's lymphoma in inflammatory bowel disease patients on immunosuppressive therapy but overall risk is low. Gut 2000; 47: 514-519.
    CrossrefPubMedGoogle Scholar
  • 19 Radford-Smith GL, Edwards JE, Purdie DM. et al Protective role of appendicectomy on onset and severity of ulcerative colitis and Crohn's disease. Gut 2002; 51: 808-813.
    CrossrefPubMedGoogle Scholar
  • 20 Cavanaugh JA. IBD International Genetics Consortium: international cooperation making sense of complex disease. Inflamm Bowel Dis 2003; 9: 190-193.
    CrossrefPubMedGoogle Scholar
  • 21 Smith MB, Lashner BA, Hanauer SB. Smoking and inflammatory bowel disease in families. Am J Gastroenterol 1988; 83 (04) 407-409.
    Google Scholar
  • 22 Reed JF, Calkins BM, Rosen L. 3rd Concordance of familial characteristics in Crohn's disease and ulcerative colitis. Diseases of the Colon & Rectum 1992; 35 (05) 405-410.
    CrossrefPubMedGoogle Scholar
  • 23 Shaw SY, Blanchard JF, Bernstein CN. Association between the use of antibiotics in the first year of life and pediatric inflammatory bowel disease. Am J Gastroenterol 2010; 105 (012) 2687-2692.
    CrossrefPubMedGoogle Scholar
  • 24 Perrin JM. et al Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics. J Pediatr Gastroenterol Nutr 2008; 46 (02) 164-171.
    CrossrefPubMedGoogle Scholar
  • 25 Turner D. et al Appraisal of the pediatric Crohn's disease activity index on four prospectively collected datasets: recommended cutoff values and clinimetric properties. Am J Gastroenterol 2010; 105 (09) 2085-2092.
    CrossrefPubMedGoogle Scholar
  • 26 Kappelman MD. et al Short pediatric Crohn's disease activity index for quality improvement and observational research. Inflamm Bowel Dis 2011; 17: 112-127.
    CrossrefPubMedGoogle Scholar
  • 27 Ishige T, Tomomasa T, Takebayashi T. et al Inflammatory bowel disease in children: epidemiological analysis of the nationwide IBD registry in Japan. J Gastroenterol 2010; 45: 911-917.
    CrossrefPubMedGoogle Scholar
  • 28 Thia KT, Li M, Ling KL. et al Azathioprine is effective in corticosteroid-dependent Asian inflammatory inflammatory bowel disease patients. Inflamm Bowel Dis 2011; 17: 809-815.
    CrossrefPubMedGoogle Scholar
  • 29 Romberg-Camps MJ. et al Inflammatory Bowel Disease in South Limburg (the Netherlands) 1991-2002; Incidence, diagnostic delay, and seasonal variations in onset of symptoms. J Crohns Colitis 2009; 3: 115-124.
    CrossrefPubMedGoogle Scholar
  • 30 Tourtelier Y. et al Incidence des maladies inflammatoires du tube digestif chez l'enfant en Bretagne (1994-1997). Arch Pediatr 2000; 7: 377-384.
    CrossrefPubMedGoogle Scholar
  • 31 Chouraki V. et al The changing pattern of Crohn's disease incidence in northern France: a continuing increase in the 10 to 19-year-old age bracket (1988-2007). Aliment Pharmacol Ther 2011; 33: 1133-1142.
    CrossrefPubMedGoogle Scholar
  • 32 Castro M. et al Inflammatory bowel disease in children and adolescents in Italy: data from the pediatric national IBD register (1996-2003). Inflamm Bowel Dis 2008; 14: 1246-1252.
    CrossrefPubMedGoogle Scholar
  • 33 Ludvigsson JF, Myrelid P. Swibreg - nationellt IBDregister I ny tappning. Lakartidningen 2009; 106: 3014-3015.
    PubMedGoogle Scholar
  • 34 Escher H. Registries in pediatric IBD. European Medicines Agency 2010 www.ema.europa.eu/docs/en_GB/document_library/Presentation/2011/03/WC500103478.pdf
    PubMedGoogle Scholar
  • 35 Rothe U. Stange Th, Laaß M. et al. High incidence of inflammatory bowel disease in German children - a prospective 10 year analysis of the Paediatric IBD Register of Saxony. (Zwischenergebnis Registertreffen 2011, Manuskript in Vorbereitung)
    Google Scholar
  • 36 Timmer A. et al Childhood onset inflammatory bowel disease: predictors of delayed diagnosis from the CEDATA German-language pediatric inflammatory bowel disease registry. J Pediatr 2011; 158: 467-473.
    CrossrefPubMedGoogle Scholar
  • 37 Blumenstein I. et al Health care and cost of medication for inflammatory bowel disease in the Rhein-Main region, Germany: a multicenter, prospective, internet-based study. Inflamm Bowel Dis 2008; 14: 53-60.
    CrossrefPubMedGoogle Scholar
  • 38 Yu W. et al Association of a Nkx2-3 polymorphism with Crohn's disease and expression of Nkx2-3 is up-regulated in B cell lines and intestinal tissues with Crohn's disease. J Crohns Colitis 2009; 3: 189-195.
    CrossrefPubMedGoogle Scholar
  • 39 Newsletter of the Center for Pediatric Inflammatory Bowel Disease at Connecticut Children’s Medical Center, Fall 2007
    PubMed