Paediatrics and the Registry

Dr Richard K. Russell Consultant Paediatric Gastroenterologist and Honorary Clinical Senior Lecturer Department of Paediatric Gastroenterology, Yorkhill Hospital, Glasgow
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 IBD Registry. All rights reserved

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Importance of registry

Paediatric 25% of all IBD IBD impact in adolescents profound Rapid rise in paediatric IBD patient numbers Previous UK survey 1999-2000 Only 1 incidence UK study in 21st century

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Age-sex adjusted incidence rate of paediatric CD in Scotland (100,000/ yr)!

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..five-fold increase in paediatric Crohns disease in 34 years..

Henderson P et al. Inflammatory Bowel Diseases 2012;18(6):999-1005.

Paediatric CD incidence systematic review

.. Of studies calculating CD incidence, 60% reported significantly increased incidence

Benchimol EI et al. Inflammatory Bowel Diseases 2011; 17(1):423-39.

IBD Registry. All rights reserved ibdregistry.org.uk Benchimol EI et al. Inflammatory Bowel Diseases 2011; 17(1):423-39.

Past and present

Failed Paediatric registry previously > 90% participation in UK audit (25 sites) Scottish incidence study ongoing Selected European registry participation Point prevalence SES only

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Paediatrics in adult practice

~20% of paediatric patients seen in adult practice in the UK September 2010-11, 1023 patients seen age 16 and under in 202 adult centres 78/202 said looked after <16 years Only half had appropriate facilities
1. Fitzgerald M et al. Frontline Gastroenterology 2013;4(1):25-31.
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Benefits of the Registry

Provide contemporary paediatric numbers Match resources to numbers of patients Look at paediatric / adult split Provide regional data Prospectively assess change over time Automatic production of audit data

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Patient management
Real time Captures all clinical information Repeatability Seamless passage to adult services Specific paediatric adaptions

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 IBD Registry. All rights reserved

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Challenges for paediatrics

Proof of principle Early adoption Avoiding audit fatigue Culture change Cost

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Local issues
Integration with hospital IT systems Buy in from all MCN hospitals Colleagues Fits with corporate goals Fits into best practice model Use of CHI to match outcomes

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Summary
Registry provides fantastic opportunity Impact more profound than new drug class Represents 21st century IBD management Paediatrics greatest benefit Initial challenges all manageable

IBD Registry. All rights reserved

ibdregistry.org.uk

 IBD Registry. All rights reserved

ibdregistry.org.uk