June 28, 2010

Hankje

Escher

USA registries

European

registries

Longterm registry

(Centocor)

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

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

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

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

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

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

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:•

2004 –

2006: electronic forms sent by email

•

2006 –

now: web-based registry

Coordination in Rotterdam, The Netherlands

United KingdomUnited Kingdom

DenmarkDenmark

SwedenSweden

PortugalPortugal

FranceFrance

GermanyGermanyPolandPoland

Czech RepublicCzech Republic

CroatiaCroatia

ItalyItaly

NetherlandsNetherlands

IsraelIsrael

NorwayNorway

BelgiumBelgium

GreeceGreece

LatviaLatvia

HungaryHungarySloveniaSlovenia

Cohort May 2004 – May 2009n=2280

Study cohortn=2087

Exclusion:4 patients > 18 years at diagnosis

Exclusion:143 patients retrospectively

included

Exclusion:12 patients without diagnosis

Exclusion: 34 patients with incorrect date of

diagnosis*

CD (n=1227) IC (n=195) UC (n=665)

* Date of diagnosis > 1 month after date of registration

0 50 100 150 200 250

Royal Hospital for Children Bristol

Birmingham Children's Hospital

Polish-American Children's Hospital, Jagiellonian University Cracow

Karolinska Inst itute Stockholm

Hvidovre Hospital Copenhagen

Dr. v. Haunersches Kinderspital, Ludwig-M aximillians-University M unich

Erasmus M C-Sophia Children's Hospital Rotterdam

M edical University of Warsaw

The Children's M emorial Health Inst itute Warsaw

Chelsea and Westminster Hospital London

University of Rome La Sapienza

Children's Hospital Zagreb

Charles University Teaching Hospital Hradec Kralove

University of Athens

University Children's M edical Centre Bonn

Queen M ary's Hospital for Children Surrey

M eyer Hospital Florence

E. Wolfson M edical Centre Tel Aviv

Hopital Necker-Enfants M alades Paris

Ostfold Central Hospital

University Hospital Prague-M otol

Edmond &amp; Lili Safra Children's Hospital, Sheba M edical Centre Tel Hashomer

Semmelweis Egyetem I. sz. Gyermekklinika Budapest

Hospital S. Joao Porto

Universita degli Studi di Napoli Federico II Napoli

Childrens hospital Ljublana

UZ Gent

Hospital Robert Debre, AP-HP Paris

Akademiska Barnsjukhuset Uppsala

St if tung Deutsche Klinik fur Diagnost ik GM BH Wiesbaden

Children's Hospital, Technical University Dresden

Koningin Paola Kinderziekenhuis Antwerpen ZNA

Childrens Hospital Brescia

Childrens University Hospital Riga

Total patients patients with missing/wrong data

Mean

age

at diagnosis 12.5 years

Mean

diagnostic

delay

5 months

Ethnicity

86% Caucasian

1st

degree

family

history

in 10.6%

Extraintestinal

symptoms

in 18.3%

Perianal

disease

in 9.1%

Stenosis

in 13.6%

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

1%

29%

29%

12%

18%

4%

6%

0% 5% 10% 15% 20% 25% 30% 35%

only upper GI

ileocolon + upper GI

ileocolon

colon + upper GI

colon

ileum + upper GI

ileum

N=990

Centocor; FDA and EMEA mandate

USA (start 2007?)

6 European

(start 2009) countries

Europe

10-15 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