Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 228 days ago
Documentation
Description:
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 a case report form at recruitment for each participant recruited on the basis of their disease. Typically variables include questions that may be used to partition or group patients by their disease course and severity, and include disease history and medication use. 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.
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-85
Follow Up:
1 - 10 Years
Provenance
Origin
Purposes:
Study
Sources:
Paper-based
Collection Situations:
Clinic
Temporal
Accrual Periodicity:
Quarterly
Distribution Release Date:
31 March 2021
Start Date:
02 February 2005
Time Lag:
1-2 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 is currently via an experimental safe haven built in
Microsoft Azure.
Access Request Cost:
Delivery Lead Time:
Not applicable
Jurisdictions:
GB-GBN
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:
- SNOMED CT
- HPO
Languages:
en
Formats:
text/csv
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Participants who have clinical data (disease and/or medication data collected at recruitment by a healthcare professional); this number excludes any healthy participants who have no current disease or medications
57559
COUNT
26 November 2020