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IBD Registry

Population Size

82,268

People

Years

2016

Associated BioSamples

None/not available

Geographic coverage

United Kingdom

Lead time

1-2 months

Summary

The IBD Registry captures longitudinal clinical data on IBD patients from NHS Trusts. The dataset includes demographics; diagnosis and phenotype; medications (greater details on biologics); interventions; clinical assessment and PROMS.

Documentation

The IBD Registry captures longitudinal clinical data on patients with IBD at point of care from NHS Trusts across the UK. All patient records have a recorded diagnosis. The dataset includes broad demographics; phenotype of the disease; medications, plus greater details on biological treatments; clinical assessment and patient-reported outcomes. The dataset is available for retrospective studies (service evaluation and quality of care), and for research with prospective recruitment of consented patients for data already held. The dataset is currently held by NHS Digital, with explicit permissions for linkage, and as such is linkable to NHS Digital datasets such as HES.
Dataset type
Health and disease, Treatments/Interventions, Registry
Dataset sub-type
Oral and gastrointestinal
Dataset population size
82268
Associated media
https://ibdregistry.org.uk

Keywords

Inflammatory Bowel Disease, IBD, Crohn's, colitis, NHS, pharmacovigilance, Clinical Audit dataset

Observations

Observed Node
Disambiguating Description
Measured Value
Measured Property
Observation Date

Persons

Persons (patients) with confirmed clinical diagnosis of IBD under the care of an NHS hospital

82268

COUNT

26 Oct 2021

Events

Medication events associated with PATIENTS in the IBD Registry dataset

106146

COUNT

26 Oct 2021

Events

Biologics (biological agents) treatment events associated with PATIENTS in the IBD Registry dataset

69263

COUNT

26 Oct 2021

Events

Contact events recorded by secondary care clinical teams associated with PATIENTS in the IBD Registry dataset

274631

COUNT

26 Oct 2021

Findings

PROMS (patient reported outcomes) associated with PATIENTS in the IBD Registry dataset

7060

COUNT

26 Oct 2021

Events

Admission events (admission to an NHS hospital) associated with PATIENTS in the IBD Registry dataset

19568

COUNT

26 Oct 2021

Events

Surgery events associated with PATIENTS in the IBD Registry dataset

11968

COUNT

26 Oct 2021

Provenance

Purpose of dataset collection
Disease registry
Collection source setting
Clinic, Secondary care - In-patients, Secondary care - Outpatients, Secondary care - Accident and Emergency
Image contrast
Not stated
Biological sample availability
None/not available

Details

Publishing frequency
Quarterly
Version
5.0.0
Modified

08/10/2024

Distribution release date

31/10/2021

Citation Requirements
IBD Registry Ltd

Coverage

Start date

13/01/2016

Time lag
1-2 months
Geographic coverage
United Kingdom
Minimum age range
18
Maximum age range
100
Follow-up
Continuous

Accessibility

Language
en
Controlled vocabulary
ICD10
Format
text, csv

Data Access Request

Dataset pipeline status
Not available
Access rights
https://ibdregistry.org.uk/analysis-and-research/apply-to-use-our-data/
Time to dataset access
1-2 months
Access request cost
https://ibdregistry.org.uk/analysis-and-research/apply-to-use-our-data/
Access method category
TRE/SDE
Access service description
Data may only be accessed in the IBD Registry's approved Trusted Research Environment and only by the IBD Registry team (no external analysis permitted)
Jurisdiction
GB
Data use limitation
Research-specific restrictions
Data use requirements
Institution-specific restrictions,Project-specific restrictions,Time limit on use,User-specific restriction,Ethics approval required,Geographical restrictions
Data Controller
IBD Registry Ltd
Data Processor
Data processors are approved members of staff at the health data centre (AIMES, https://aimes.uk/) and NHS Digital (England and Wales).

Dataset Types: Health and disease, Treatments/Interventions, Registry

Dataset Sub-types: Oral and gastrointestinal

Collection Sources: Clinic, Secondary care - In-patients, Secondary care - Outpatients, Secondary care - Accident and Emergency