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Transplants in Renal Disease: outcomes and the effects of immunosuppression

Population Size

868

People

Years

2000 - 2022

Associated BioSamples

None/not available

Geographic coverage

United Kingdom

England

Lead time

Not applicable

Summary

Detailed dataset of >860 patients following a renal transplant on immunosuppressive treatments curated by PIONEER (Jan 2000 to Jul 2024). Granular pathways. Deeply phenotyped. Serial physiology, blood markers, demography, outpatient data and outcomes.

Documentation

A highly granular dataset of 868 patients on immunosuppressive treatments who underwent a kidney transplant. The data includes demography, serial physiology, assessments, diagnostic codes (ICD-10 & SNOMED-CT), initial presentation, presenting symptoms, dialysis, post-transplant chronic kidney disease, procedures (OPCS4 & SNOMED-CT), imaging, prescriptions, outpatient appointments and outcomes. The current dataset includes admissions from 1st January 2000 to 1st July 2024 to observe and improve the long-term outcomes of patients but can be expanded to assess other timelines of interest.

End-Stage Renal Disease (ESRD) is the advanced stage of kidney disease requiring renal replacement therapy. Kidney transplantation offers improved outcomes but requires immunosuppressive treatment to prevent organ rejection. However, these medications pose risks such as infections and metabolic complications, highlighting the complexity of managing ESRD post-transplantation.

Geography: The West Midlands (WM) has a population of 6 million & includes a diverse ethnic & socio-economic mix. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & > 120 ITU bed capacity. UHB runs a fully electronic healthcare record (EHR) (PICS Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”.

Data set availability: Data access is available via the PIONEER Hub for projects which will benefit the public or patients. This can be by developing a new understanding of disease, by providing insights into how to improve care, or by developing new models, tools, treatments, or care processes. Data access can be provided to NHS, academic, commercial, policy and third sector organisations. Applications from SMEs are welcome. There is a single data access process, with public oversight provided by our public review committee, the Data Trust Committee. Contact pioneer@uhb.nhs.uk or visit www.pioneerdatahub.co.uk for more details.

Available supplementary data: Matched controls ambulance and community data. Unstructured data (images). We can provide the dataset in OMOP and other common data models and can build synthetic data to meet bespoke requirements.

Available supplementary support: Analytics, model build, validation & refinement A.I. support. Data partner support for ETL (extract, transform & load) processes. Bespoke and “off the shelf” Trusted Research Environment (TRE) build and run. Consultancy with clinical, patient & end-user and purchaser access/ support. Support for regulatory requirements. Cohort discovery. Data-driven trials and “fast screen” services to assess population size.

Dataset type
Health and disease, Treatments/Interventions
Dataset sub-type
Renal and urogenital
Dataset population size
868

Keywords

ESRD, Kidney transplant, Immunosuppressive treatment, Transplant outcomes, Renal replacement therapy, Chronic kidney disease, CKD, Organ rejection, Treatment efficacy, Clinical management, Infection risk, Metabolic complications, Patient outcomes, Longevity, Quality of life, Medicines

Observations

Observed Node
Disambiguating Description
Measured Value
Measured Property
Observation Date

Persons

868 patients with end stage renal disease and had a transplant

868

Count

05 Mar 2024

Provenance

Purpose of dataset collection
Study
Source of data extraction
EPR
Collection source setting
Secondary care - In-patients
Patient pathway description
Data is representative of the multi-ethnicity population within the West Midlands (42% non white). Data includes all patients admitted during this timeframe, with National data Opt Outs applied, and therefore is representative of admissions to secondary care. Data focuses on in-patient stay in hospital during the acute episode but can be supplemented on request to include previous and subsequent hospital contacts (including outpatient appointments) and ambulance, 111, 999 data.
Image contrast
Not stated
Biological sample availability
None/not available

Structural Metadata

Details

Publishing frequency
Quarterly
Version
1.0.0
Modified

08/10/2024

Distribution release date

12/03/2024

Citation Requirements
This publication uses data from PIONEER, an ethically approved database and analytical environment (East Midlands Derby Research Ethics 20/EM/0158)

Coverage

Start date

01/01/2000

End date

30/06/2022

Time lag
Less than 1 week
Geographic coverage
United Kingdom, England, West Midlands
Minimum age range
18
Maximum age range
150
Follow-up
0 - 6 Months

Accessibility

Language
en
Alignment with standardised data models
LOCAL
Controlled vocabulary
LOCAL, OPCS4, SNOMED CT, ICD10
Format
SQL, EXCEL

Data Access Request

Dataset pipeline status
Available
Time to dataset access
Not applicable
Access request cost
www.pioneerdatahub.co.uk/data/data-services-costs/
Access method category
TRE/SDE
Access service description

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.

Jurisdiction
GB-ENG
Data use limitation
General research use
Data use requirements
Project-specific restrictions
Data Controller
University Hospitals Birmingham NHS Foundation Trust

Dataset Types: Health and disease, Treatments/Interventions

Dataset Sub-types: Renal and urogenital


Collection Sources: No collection sources listed