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). The NIHR IBD BioResource extracts DNA from blood and saliva samples taken at recruitment, and measures a panel of SNPs on each DNA sample, using a commodity SNP genotyping array from e.g. Illumina or Affymetrix (now Thermofisher). This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data is available to researchers investigating the feasibility of future studies. The Technical Metadata describes a SNP annotation file – i.e. what the chip is measuring. The file itself has as many rows as there are SNPs represented on the chip, and is proprietary to the manufacturer, although deeply familiar to researchers.
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-85
Follow Up:
1 - 10 Years
Provenance
Origin
Purposes:
Study
Sources:
Machine generated
Collection Situations:
Other
Temporal
Accrual Periodicity:
Quarterly
Distribution Release Date:
31 March 2021
Start Date:
13 January 2016
Time Lag:
2-6 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/). It is also intended that SNP data be
available from the European Genome-Phenome Archive (EBI"s EGA) via managed
access - https://ega-archive.org/
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:
OTHER
Languages:
en
Formats:
- text/plink
- text/vcf
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Events
Approximate number of variants on a SNP chip
780000
COUNT
01 September 2021
Events
SNP genotyping array chips processed
11787
Count
01 September 2021