Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 226 days ago
Documentation
Associated Media:
Description:
The NIHR IBD BioResource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource acquires samples at recruitment for each participant recruited. The preferred sample collection is 3 blood tubes – see https://bioresource.nihr.ac.uk/recruiters/sample-collection-recruiters/ – from which DNA can be extracted, and plasma and sera stored. In many clinics, the NIHR BioResource blood draw follows immediately the blood collection for routine healthcare purposes. In the case of children, less blood will be taken, down to 1ml. The Technical Metadata describes the standard used by RD-Connect, the EU-wide Rare Disease biobank consortium - https://samples.rd-connect.eu/menu/main/home. During 2021, this will be replaced by an API from the UK CRC Tissue Directory, as using this discovery tool is a condition of running a Research Tissue Bank in the UK.
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-85
Follow Up:
1 - 10 Years
Provenance
Origin
Purposes:
Study
Sources:
LIMS
Collection Situations:
Other
Temporal
Accrual Periodicity:
Quarterly
Distribution Release Date:
31 March 2021
Start Date:
13 January 2016
Time Lag:
1-2 months
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 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:
LOCAL
Languages:
en
Formats:
- text
- csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Number of participants with Plasma isolated
26084
COUNT
12 September 2021
Persons
Number of participants with Serum isolated
29431
COUNT
12 September 2021
Persons
Number of participants with blood samples
20405
COUNT
12 September 2021
Persons
Participants with Plasma depleted blood samples
2217
COUNT
12 September 2021
Persons
Number of participants with DNA isolated
25940
COUNT
12 September 2021