Version: 1.0.0 | Published: 24 Mar 2026 | Updated: 35 days ago
Summary
Description:
Longitudinal, routine data for UHB NHSFT patients recruited to the 100K Genomes project that accessed Acute Care at UHB: This includes data for cancer and rare diseases in adults and children, with investigations undertaken and outcomes.
Access Tier:
Controlled
Contact Point:
Health Theme:
- Health products, technologies, data & research
- Noncommunicable diseases – metabolic & cardiopulmonary
Health Category:
Electronic Health Records (EHRs)
Number of Unique Individuals:
3637
Documentation
Associated Media:
Documentation:
1 in 17 people are born with or develop a rare disease during their lifetime. 80% of rare diseases have an identified genetic component. However, there are usually significant diagnostic delays. The 100k Genome project was established to collect clinical data, genomic sequencing and samples from people with cancer and rare diseases, to better understand disease and find novel treatments and interventions. This includes rare cardiovascular, ciliopathy, endocrine, gastroenterological, haematological, metabolic, neurological, renal, respiratory skeletal and rheumatological disorders and cancers.
The PIONEER University Hospital Birmingham (UHB) secondary care 100k genomics dataset contains granular demographic, morbidity, treatment and outcome data, supplemented with acute care contacts with serial physiology, blood biomarker data from UHB patients recruited to this programme, to better understand the acute healthcare needs of this group of patients.
PIONEER geography: The West Midlands has a population of 5.9M and includes a diverse ethnic and socio-economic mix. There is a higher than average percentage of minority ethnic groups and a higher than average proportion of patients with rare diseases. Birmingham is home to the first Centre for Rare Diseases for adults and children, treating more than 500 rare diseases and 9000 patients per year.
Electronic Health Records: University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2M patient episodes per year, 2750 beds and 100 ITU beds.
Scope: All patients recruited to the 100K genome project from UHB. This includes all routinely collected health data for all these patients, but data is uniquely supplemented with all acute care contacts through UHB. The dataset includes highly granular patient demographics and co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed and administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes.
Available supplementary data: Matched controls; ambulance, synthetic data.
Available supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.
Coverage
Spatial
Spatial Coverage:
- United Kingdom
- England
- West Midlands
Temporal
Start Date:
01 January 2000
End Date:
04 May 2020
Frequency:
STATIC
Date of Latest Release:
30 September 2020
Date of First Release:
08 October 2024
Temporal Aggregation:
> 10 Years
Provenance
Origin
Purpose:
Care
Collection Situation:
- Clinic
- Secondary care - In-patients
- Community
- Home
Image Contrast:
Not stated
Method of Collection:
EPR
Access and Governance
Usage
Data Use Requirements:
Project specific restriction
Access
Jurisdiction:
United Kingdom of Great Britain and Northern Ireland
Data Controller:
University Hospitals Birmingham NHS Foundation Trust
Delivery Lead Time:
1-2 months
Legal Basis:
Research use only
Health Data Access Body:
University Hospitals Birmingham NHS Foundation Trust
Format and Standards
Language:
English
Format:
SQL
Conforms To:
LOCAL
Coding System:
- SNOMED CT
- ICD10
Data Distribution
Data Status:
Available
Distribution:
Trusted Research Environments (TRE) are built using Microsoft Azure services and
hosted in the UK to provide research teams a safe, secure and agile environment
which allows users to quickly analyse, interpret and form an enriched view of
primary care information through a range of integrated datasets. Health data
collated from multiple sources is ingested into a secure data lake which will
then allow subsets of data to be made available to research teams on approval of
a data request. Once approved a customer specific TRE is made available with a
standard set of leading analytical tools from Microsoft including Azure
Databricks, Azure Machine Learning, Azure SQL and Azure Synapse (for large-scale
data warehouses). Specific tools can be provided at an additional cost over the
standard platform data access charge and the PIONEER team will work with you to
determine your exact needs. Access to the TRE is managed using the latest
virtual desktop technology to provide a safe and secure end-user experience. By
utilising leading edge design PIONEER are able to create TREs rapidly to enable
us to service any customer requirement.,
www.pioneerdatahub.co.uk/data/data-services-costs/
Observations
Name
Population Type
Value
Description
Variable Measured
Unit Code
Observation Date
Number of Records
Minimum Typical Age
Maximum Typical Age
Persons
3637
3637 patients recruited to the 100,000 Genomic project within the West Midlands including rare diseases and cancers.
COUNT
18 December 2019
3637
0
100
Origin
Name:
Data Catalogue