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NIHR BioResource: Consent records
Population Size
144,517
People
Years
2005
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
Lead time
Not applicable
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
recall, consent
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
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/)