registry as research tool

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IBD Registry. All rights reserved ibdregistry.org.uk

Registry as a tool for

research

Dr Keith Bodger


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Keith BodgerDigestive Diseases UnitAintree University Hospital

Liverpool

Department of BiostatisticsInstitute of Translational Medicine

University of Liverpool

The

IBDRegistry As A

ToolForResear

ch


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My outpatient activity data for20!


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Information,combined with

the right suort,

is the key to

better care,better outcomes

and reduced

costs!"##


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It is increasinglyrecognized thatconclusions drawn fromclassical clinical trialsare not always a usefulaid for decision-making

- assessing the value ofa drug or technologyrequires anunderstanding of itsimpact on currentmanagement in a

practical, real-life

setting.

Real "orld

data


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Standard FA service thatis knowledge-based and

activelysupportsserviceimprovement

and clinicalresearch


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Maximising the vale of the UK IBDRegistry for service delivery! aditand research


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Develop and testne" "ays to

analyse rotineadministrative#$S data andexplore thepotential of

lin%age to IBDRegistry dataset

&ngage "ithsta%eholders

to ensreanalyses andreports arerelevant totheir needs


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Rotine Administrative Data#Hospital $pisode %tatistics&


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A'(Ad'ittedpatient care

)'D(utpatientActivity

A*&A)$Attendance

Rotine Administrative Data#Hospital $pisode %tatistics&


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Analysis


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*eveloped algorith'sto classify A++ careepisodes recorded forthe local I+* cohort#all,cause activity&


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Relevantemergencyadmissions,missed-.y focsingon primarydiagnosisalone


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My outpatient activity data for20!

/


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Hospital Episode Statistics Inpatient & Daycase Episodes

Outpatient attendance

Accident & Emergency attendance


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Current diagnosis $%&, &D or IBD'%(

Date of diagnosis

Date of symptom onset

Consent'related items

UC extent: )roctitis, distal, e*tensive

CD classify: +ocation and behaviour

Smoking status

Date of starting biologics

Admissions

Surgery

Minimum dataset Hospital Episode Statistics Inpatient & Daycase Episodes




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Current diagnosis $%&, &D or IBD'%(

Date of diagnosis

Date of symptom onset

Consent'related items

UC extent: )roctitis, distal, e*tensive

CD classify: +ocation and behaviour

Smoking status

Date of starting biologics

Admissions Surgery

Minimum dataset Hospital Episode Statistics Inpatient & Daycase Episodes




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200-

200!-0.

200.-0/

200/-0

2001-0

200-01

200-0

203-!

202-3

20-2

2'onths

%creening

2'onths

4ollo"up

All,cause ad'issions #$'ergency5 $lective5 *aycase5 (ther&

6ri'ary diagnosis and any co,'or7idities $'ergency ad'issions for I+* care #"ith or

"ithout surgery& Ma8or surgical resection #e9g9 :olonic5 %'all

7o"el&

Minor surgery #6erianal procedure& Infusion visits $ndoscopies (6* visits # e9g9 7y specialities5 consultant& A)$ #all,cause& attendances # Ad'itted- ;ot

ad'itted& In,hospital 'ortality

30 days

3 'onths

2 'onths

*ate of stinfusion visit

Key events relating to IBD patients commencing.iologics


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&mergency admissions in patients commenced on.iologics

0year .efore versusyear after the start date recorded in the registrysystem1

n


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Research*esigns


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Registry and Research %tandardi=ed5 structured dataset

Tools #6M% or >e7Tool& to collect the data electronically

Any hospital "ith an internet connection?

%ecure data "arehousing

:onsent 'odel for secondary uses #@-, pro8ect,specic&

Local eBport for investigating sites to analyse their data

*eveloping analytical 'ethods #data infor'ation&

*eveloping linCages to eBternal data #H$%&

Application and funding 'odel to 7e for'ali=ed 6roof,of,concept studies are in progress


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registry as research tool

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