Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 228 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 records consent details – form, version and date - from participants at many points of recontact. In addition, participants are empowered to contact the study directly to express their preferences. The primary use of consent records is as an exclusion criterion when participants are invited to take part in experimental medicine studies. However, consent is also factored in to the release of samples and data for sample-only and data-only studies. One implication, is that data releases have freezes that capture a snapshot of the current consent statuses. How the withdrawal process is managed, and implications for whether data can be removed rapidly from already published datasets is described in our Participant Privacy Notice, online at https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/privacy-notice/
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:
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
Languages:
en
Formats:
- text
- csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Participants who have consent information
34353
COUNT
01 September 2021