Documentation
Associated Media:
Description:
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.
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-100
Follow Up:
Continuous
Provenance
Origin
Purposes:
Disease registry
Collection Situations:
- Clinic
- Secondary care - In-patients
- Secondary care - Outpatients
- Secondary care - Accident and Emergency
Temporal
Accrual Periodicity:
Quarterly
Distribution Release Date:
31 October 2021
Start Date:
13 January 2016
Time Lag:
1-2 months
Accessibility
Access
Access Service:
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)
Access Request Cost:
Delivery Lead Time:
Not applicable
Jurisdictions:
GB
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).
Usage
Data Use Limitations:
Research-specific restrictions
Data Use Requirements:
- Institution-specific restrictions
- Project-specific restrictions
- Time limit on use
- User-specific restriction
- Ethics approval required
- Geographical restrictions
Resource Creators:
IBD Registry Ltd
Format and Standards
Vocabulary Encoding Schemes:
ICD10
Languages:
en
Formats:
- text
- csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Events
Contact events recorded by secondary care clinical teams associated with PATIENTS in the IBD Registry dataset
274631
COUNT
26 October 2021
Events
Biologics (biological agents) treatment events associated with PATIENTS in the IBD Registry dataset
69263
COUNT
26 October 2021
Events
Surgery events associated with PATIENTS in the IBD Registry dataset
11968
COUNT
26 October 2021
Events
Medication events associated with PATIENTS in the IBD Registry dataset
106146
COUNT
26 October 2021
Events
Admission events (admission to an NHS hospital) associated with PATIENTS in the IBD Registry dataset
19568
COUNT
26 October 2021
Findings
PROMS (patient reported outcomes) associated with PATIENTS in the IBD Registry dataset
7060
COUNT
26 October 2021
Persons
Persons (patients) with confirmed clinical diagnosis of IBD under the care of an NHS hospital
82268
COUNT
26 October 2021