June 28, Hankje Escher

Transcription

1 June 28, 2010 Hankje Escher

2 USA registries European registries Longterm registry (Centocor)

3 Pediatric IBD consortium (Heyman) Start 2000: prevalent and incident cases, ± 1600 patients 6 sites: San Francisco, Chicago, Atlanta, Houston, Philadelphia, Boston Publications on: Phenotype IFX premedication and infusion reactions Initial surgery risk in CD Gender related phenotype and disease course Age at onset-related phenotype and disease course Racial/ethnic differences Extraintestinal manifestations Complications of CD

4 Pediatric IBD Collaborative Research Group (Hyams) Start 2002, consecutive incident cases < 16 years, ± 250 cases in 18 Eastern US and Canadian centers prospective registration by research nurses Publications on: Response to CS in UC Response to CS and influence of IFX in CD QoL (IMPACT) at diagnosis and 1 year follow-up Lab tests at diagnosis Perianal disease in CD IFX maintenance in CD Appraisal of PUCAI IFX maintenance in UC

5 EPIMAD (Colombel) Start 1988, pediatric and adult IBD, ± 500 pediatric patients Population based inception cohort in Northern France Interviewer practitioners collect data from pediatric gastroenterologists Publications on: Environmental risk factors in pediatric IBD Incidence and disease location Natural history of CD Malnutrition and Growth in CD

6 CEDATA (Buderus) Germany and Austria, start 2004, ± 600 patients Prevalent and incident cases, reported by pediatric gastroenterologists Data on: disease phenotype at presentation first treatment

7 SIGENP IBD Study Group Italian Pediatric National pediatric IBD register start 1996, patients at diagnosis, ± 1500 patients all 40 ped gastroenterology centers in Italy retrospective and prospective Publication on: Incidence and phenotype

8 EUROKIDS (Escher) Web-based registry of ESPGHAN IBD working group in 18 European countries and Israel incident cases < 18 years, registration at diagnosis Start 2004, ongoing, now ± 3000 patients Continued registration of new patients Open for new participants, new countries Data on: Diagnostic work-up Disease location in CD Disease location in UC and IBD-U Height and weight at diagnosis Colitis in the very young

9 Initiative of IBD working group of ESPGHAN Start May 2004 with 21 centres in 12 countries now 18 countries Prospective registration of newly diagnosed IBD patients Data entry: : electronic forms sent by now: web-based registry Coordination in Rotterdam, The Netherlands

10 United Kingdom Belgium France Norway Netherlands Denmark Germany Slovenia Sweden Poland Latvia Czech Republic Hungary Croatia Portugal Italy Greece Israel

11 Cohort May 2004 May 2009 n=2280 Exclusion: 143 patients retrospectively included Exclusion: 34 patients with incorrect date of diagnosis* Exclusion: 12 patients without diagnosis Exclusion: 4 patients > 18 years at diagnosis Study cohort n=2087 CD (n=1227) IC (n=195) UC (n=665) * Date of diagnosis > 1 month after date of registration

12 Childrens University Hospital Riga Childrens Hospital Brescia Koningin Paola Kinderziekenhuis Antwerpen ZNA Children's Hospital, Technical University Dresden Stiftung Deutsche Klinik fur Diagnostik GM BH Wiesbaden Akademiska Barnsjukhuset Uppsala Hospital Robert Debre, AP-HP Paris UZ Gent Childrens hospit al Ljublana Universita degli Studi di Napoli Federico II Napoli Hospital S. Joao Porto Semmelweis Egyetem I. sz. Gyermekklinika Budapest Edmond & Lili Safra Children's Hospital, Sheba M edical Centre Tel Hashomer University Hospital Prague-M otol Ostfold Central Hospital Hopital Necker-Enfants M alades Paris E. Wolfson M edical Centre Tel Aviv M eyer Hospital Florence Queen M ary's Hospital for Children Surrey University Children's M edical Centre Bonn Universit y of Athens Charles University Teaching Hospital Hradec Kralove Children's Hospital Zagreb University of Rome La Sapienza Chelsea and Westminster Hospital London The Children's M emorial Health Institute Warsaw M edical University of Warsaw Erasmus M C-Sophia Children's Hospital Rotterdam Dr. v. Haunersches Kinderspital, Ludwig-M aximillians-university M unich Hvidovre Hospital Copenhagen Karolinska Institute Stockholm Polish-American Children's Hospital, Jagiellonian University Cracow Birmingham Children's Hospital Royal Hospital for Children Bristol Total patients patients with missing/wrong data

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14 Mean age at diagnosis 12.5 years Mean diagnostic delay 5 months Ethnicity 86% Caucasian 1 st degree family history in 10.6% Extraintestinal symptoms in 18.3% Perianal disease in 9.1% Stenosis in 13.6%

15 57% had complete Porto work-up = upper GI + ileocolonoscopy + small bowel imaging 88% upper GI endoscopy 88% colonoscopy 70% terminal ileum 70% imaging of small bowel (SBFT, MRI) 95% terminal ileum visualised by endoscopy or radiology

16 ileum ileum + upper GI 4% 6% colon 18% colon + upper GI 12% ileocolon ileocolon + upper GI 29% 29% only upper GI 1% 0% 5% 10% 15% 20% 25% 30% 35% N=990

17 Centocor; FDA and EMEA mandate USA (start 2007?) 6 European (start 2009) countries Europe sites France, Italy, Germany, UK, Belgium, Netherlands 5000 patients, 20 year follow-up 2000 Crohn s disease, IFX treated 2000 Crohn s disease, not IFX treated 1000 ulcerative colitis/unclassified