Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago
Documentation
Associated Media:
https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sources
https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/
https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/privacy-notice/
https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/
Description:
The NIHR IBD Bioresource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to recontact participants to invite them to take part in experimental medicine studies, although sample-only and data-only studies are permitted. We also record NHS number, where known, to allow linkage to healthcare records. Recruitment takes place at disease clinics. A participant is not considered a member of the NIHR IBD BioResource without contact details.
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-85
Follow Up:
1 - 10 Years
Provenance
Origin
Purposes:
Administrative
Collection Situations:
- Clinic
- Community
- Home
Temporal
Accrual Periodicity:
Continuous
Start Date:
13 January 2016
Time Lag:
Not applicable
Accessibility
Access
Access Rights:
Access Service:
Some de-identified data may be released to researchers in a platform-independent
filetype (e.g. CSV). However, access to any data acquired via NHS Digital is
subject to strict restrictions governing where data may be accessed and from
which locale - access in a Trustworthy Research Environment (TRE) at AIMES
secure data centre (https://aimes.uk/).
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-specific restrictions
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:
- LOCAL
- NHS NATIONAL CODES
Languages:
en
Formats:
- text
- csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Participants who have contact details
34065
COUNT
01 September 2021