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NIHR IBD BioResource: Sample holding

Population Size

20,405

People

Population Size statistic card

Years

2016

Years statistic card

Associated BioSamples

DNA

Plasma

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

2-6 months

Lead time statistic card

Dataset

Publications using this dataset (external search)

Collection(s)

Data Custodian

Summary

NIHR IBD 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 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.

Dataset type

Health and disease, Measurements/Tests

Dataset sub-type

Oral and gastrointestinal

Dataset population size

20405

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/recruiters/sample-collection-recruiters/

Keywords

Observations

Observed Node	Disambiguating Description	Measured Value	Measured Property	Observation Date
Persons	Number of participants with blood samples	20405	COUNT	12 Sep 2021
Persons	Participants with Plasma depleted blood samples	2217	COUNT	12 Sep 2021
Persons	Number of participants with Plasma isolated	26084	COUNT	12 Sep 2021
Persons	Number of participants with Serum isolated	29431	COUNT	12 Sep 2021
Persons	Number of participants with DNA isolated	25940	COUNT	12 Sep 2021

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

5.0.0

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

13/01/2016

Time lag

1-2 months

Geographic coverage

United Kingdom

Minimum age range

Maximum age range

Follow-up

1 - 10 Years

Accessibility

Language

Controlled vocabulary

LOCAL

Format

text, csv

Data Access Request

Dataset pipeline status

Not available

Access rights

https://bioresource.nihr.ac.uk/using-our-bioresource

Time to dataset access

2-6 months

Access request cost

https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/

Access method category

Varies based on project

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 in a Trustworthy Research Environment (TRE) at AIMES secure data centre (https://aimes.uk/).

Jurisdiction

GB-GB

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/)