Dataset - Health Data Research Gateway

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NIHR BioResource: Case report form

Population Size

57,559

People

Population Size statistic card

Years

2005

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

Data Uses / Research Projects

Publications using this dataset (external search)

Data Custodian

Summary

Each participant recruited on the basis of their disease (rare or common) has a disease-specific CRF completed by their clinical care team. These are non-exhaustive-we have the chance to ask for more information-but form the basis of analysis and recall.

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 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.

Dataset type

Health and disease

Dataset sub-type

Not applicable

Dataset population size

57559

Keywords

Observations

Observed Node	Disambiguating Description	Measured Value	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 Nov 2020

Provenance

Purpose of dataset collection

Study

Source of data extraction

Paper-based

Collection source setting

Clinic

Image contrast

Not stated

Biological sample availability

DNA,Plasma,Serum

Structural Metadata

Details

Publishing frequency

Quarterly

Version

1.0.0

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

02/02/2005

Time lag

1-2 months

Geographic coverage

United Kingdom

Minimum age range

Maximum age range

Follow-up

1 - 10 Years

Accessibility

Language

Controlled vocabulary

SNOMED CT, HPO

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

TRE/SDE

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 is currently via an experimental safe haven built in Microsoft Azure.

Jurisdiction

GB-GBN

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/)