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NIHR BioResource: Sample holding
Population Size
Not reported
Years
2005
Associated BioSamples
DNA
Plasma
Geographic coverage
United Kingdom
Lead time
2-6 months
Summary
NIHR BioResource samples are held at the NIHR National Biosample Centre in Milton Keynes. Metadata on what is available should become available through the UK CRC Tissue Directory, as mandated by Research Tissue Bank status.
Documentation
The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022. The NIHR BioResource acquires samples at recruitment for each participant recruited. With the exception of the GLAD study, which posts saliva kits direct to participants’ homes, the preferred sample collection is 3 blood tubes – see https://bioresourcesupport.org.uk/live-samples/ - 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 2020, 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.
Dataset type
Health and disease
Dataset sub-type
Not applicable
Keywords
recall, samples, DNA, plasma, sera
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Events | Sample tubes collected from participants | 225265 | COUNT | 26 Nov 2020 |
Provenance
Purpose of dataset collection
Study
Source of data extraction
LIMS
Collection source setting
Other
Image contrast
Not stated
Biological sample availability
DNA,Plasma,Serum
Structural Metadata
Details
Publishing frequency
Quarterly
Version
1.0.0
Modified
08/10/2024
Distribution release date
31/03/2021
Citation Requirements
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."
Coverage
Start date
02/02/2005
Time lag
1-2 months
Geographic coverage
United Kingdom
Minimum age range
18
Maximum age range
85
Follow-up
1 - 10 Years
Accessibility
Language
en
Controlled vocabulary
LOCAL
Format
text/csv
Data Access Request
Dataset pipeline status
Not available
Access rights
Time to dataset access
2-6 months
Access request cost
Access method category
TRE/SDE
Access service description
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 is currently via an experimental safe haven built in Microsoft Azure.
Jurisdiction
GB-GBN
Data use limitation
Research use only
Data use requirements
Institution-specific restrictions,Project-specific restrictions,Return to database or resource,Time limit on use,User-specific restriction
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/)