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IBD Registry

Population Size

82,268

People

Population Size statistic card

Years

2016

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

1-2 months

Lead time statistic card

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

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

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