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Transplants in Renal Disease: outcomes and the effects of immunosuppression

Population Size

868

People

Population Size statistic card

Years

2000 - 2022

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

England

Geographic coverage statistic card

Lead time

1-2 months

Lead time statistic card

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

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

1-2 months

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: Secondary care - In-patients

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