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NIHR IBD BioResource: NHS Trust data
Population Size
6,269
People
Years
2021
Associated BioSamples
DNA
Plasma
Geographic coverage
United Kingdom
England
Lead time
2-6 months
Summary
10 NHS Trusts have been asked to provide detailed data on participants in their Trust. Categories of data requested include: test results; prescribing; imaging; digital pathology; data from disease-specific databases and registries; discharge summaries.
Documentation
The NIHR IBD BioResource comprises ~34k participants with Inflammatory Bowel Disease (IBD). For the Gut Reaction programme, 10 NHS Trusts have been asked to provide detailed data on the participants in their Trust. Categories of data requested include: test results; prescribing; imaging; digital pathology; data from disease-specific databases and registries; and discharge summaries. While the formats and contents will vary, the hope is that this will be a much richer source of data than nationally collated datasets, like NHS Digital.
Dataset type
Health and disease, Treatments/Interventions, Measurements/Tests, Imaging types
Dataset sub-type
Oral and gastrointestinal
Dataset population size
6269
Keywords
IBD, Crohn's, colitis, recall, NHS, Trusts
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Persons | Participants from NHS Trusts that have provided additional EHR data as part of Gut Reaction. | 6269 | COUNT | 02 Jul 2021 |
Provenance
Purpose of dataset collection
Study
Source of data extraction
EPR
Collection source setting
Secondary care - Accident and Emergency, Secondary care - Outpatients, Secondary care - In-patients
Image contrast
Not stated
Biological sample availability
DNA,Plasma,Serum
Details
Publishing frequency
Irregular
Version
1.0.0
Modified
08/10/2024
Citation Requirements
NIHR BioResource. Acknowledgement text: "We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care."
Coverage
Start date
01/10/2021
Time lag
2-6 months
Geographic coverage
United Kingdom, England
Minimum age range
18
Maximum age range
85
Follow-up
1 - 10 Years
Accessibility
Language
en
Controlled vocabulary
NHS NATIONAL CODES
Format
text, csv
Data Access Request
Dataset pipeline status
Not available
Access rights
Time to dataset access
2-6 months
Access request cost
Access method category
TRE/SDE
Access service description
Data may only be accessed in an approved Trustworthy Research Environment (TRE).
Jurisdiction
GB-GB
Data use limitation
Research use only
Data use requirements
Institution-specific restrictions,Project-specific restrictions,Return to database or resource,Time limit on use,User-specific restriction
Data Controller
Cambridge University Hospitals NHS Foundation Trust (CUH)
Data Processor
Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)