Version: 0.0.4 | Published: 26 Jul 2023 | Updated: 666 days ago
Documentation
Description:
The NIHR IBD Bioresource comprises ~30k participants with Inflammatory Bowel Disease (IBD), which include the members of the HDR UK IBD Hub. 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 are available to researchers investigating the feasibility of future studies.
Is Part Of:
Not Applicable
Coverage
Spatial:
United Kingdom (https://www.geonames.org/2635167/united-kingdom.html)
Typical Age Range:
18-85
Follow Up:
1 - 10 YEARS
Physical Sample Availability:
- DNA
- PLASMA
- SERUM
Provenance
Origin
Purposes:
STUDY
Sources:
PAPER BASED
Collection Situations:
CLINIC
Temporal
Accrual Periodicity:
QUARTERLY
Distribution Release Date:
31 March 2021
Start Date:
13 January 2016
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:
2-6 MONTHS
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.
Is Referenced By:
Publications (with DOIs) are listed at https://bioresource.nihr.ac.uk/publications/
Format and Standards
Vocabulary Encoding Schemes:
- SNOMED CT
- HPO
Conforms To:
I2B2
Languages:
en
Formats:
text/csv
Enrichment and Linkage
Qualified Relations:
- ALL
- COVID-19 SARI-Watch (formerly CHESS)
- Civil Registration - Deaths
- Covid-19 Second Generation Surveillance System
- Emergency Care Data Set (ECDS)
- Hospital Episode Statistics Accident and Emergency
- Hospital Episode Statistics Admitted Patient Care
- Hospital Episode Statistics Critical Care
- Hospital Episode Statistics Outpatients
- Intensive Care National Audit & Research Centre (ICNARC) Case Mix Programme (https://www.icnarc.org/Our-Audit/Audits/Cmp/About)
Derivations:
Not Available
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)
33632
COUNT
26 November 2020
Origin
Name:
SDE Home