Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago
Documentation
Associated Media:
Description:
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.
Coverage
Spatial:
United Kingdom,England
Typical Age Range:
18-85
Follow Up:
1 - 10 Years
Provenance
Origin
Purposes:
Study
Sources:
EPR
Collection Situations:
- Secondary care - Accident and Emergency
- Secondary care - Outpatients
- Secondary care - In-patients
Temporal
Accrual Periodicity:
Irregular
Start Date:
01 October 2021
Time Lag:
2-6 months
Accessibility
Access
Access Rights:
Access Service:
Data may only be accessed in an approved Trustworthy Research Environment (TRE).
Access Request Cost:
Delivery Lead Time:
Not applicable
Jurisdictions:
GB-GB
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/)
Usage
Data Use Limitations:
Research use only
Data Use Requirements:
- Institution-specific restrictions
- Project-specific restrictions
- Return to database or resource
- Time limit on use
- User-specific restriction
Resource Creators:
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."
Format and Standards
Vocabulary Encoding Schemes:
NHS NATIONAL CODES
Languages:
en
Formats:
- text
- csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Participants from NHS Trusts that have provided additional EHR data as part of Gut Reaction.
6269
COUNT
02 July 2021