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NIHR BioResource: Consent records

Population Size

144,517

People

Population Size statistic card

Years

2005

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

Not applicable

Lead time statistic card

Summary

The NIHR BioResource records consent dates and versions for each and every participant consent event. We also record use of opt-ins and opt-outs including pre-GDPR. This permits us to manage data releases in line with participants' expectations.

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 records consent details – form, version and date - from participants at many points of recontact. In addition, participants are empowered to contact the study direct to express their preferences. The primary use of consent records is as an exclusion 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/privacy/

Dataset type

Health and disease

Dataset sub-type

Not applicable

Dataset population size

144517

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

Participants who have consent information

144517

COUNT

26 Nov 2020

Provenance

Purpose of dataset collection

Administrative

Collection source setting

Clinic, Community, Home

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Continuous

Version

1.0.0

Modified

08/10/2024

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

Not applicable

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

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

Time to dataset access

Not applicable

Jurisdiction

GB-GBN

Data use limitation

Research-specific restrictions

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/)

Dataset Types: Health and disease

Collection Sources: Clinic, Community, Home

Relationships: