Data Use Register

The Data Use Register summaries projects on the platform.

Active Projects

MVP Pilot - Heart Failure use case

ID: SDE_EE_PROJ_A0001

Data Access Agreement (DAA): Counter signed date: Thursday 18 April 2024 Time period: 14 months

Contract Organisation: Name: Cambridge University Hospitals NHS Foundation Trust Legal Name: Cambridge University Hospitals NHS Foundation Trust

Number of Patients: 24,000

Data sources: CUH, EEAST, MKUH, NNUH, NWAFT

Funding sources: NHS England

Project Start Date: Wednesday 02 October 2024 Planned Project End Date: Tuesday 30 September 2025

PPIE Details: Involvement of patient groups, Public consultation

Summary

This is project aims to improve health outcomes by reducing 30-day readmissions/deaths for patients with a heart failure primary diagnosis

Project team

Name	Position	Organisation
Dr Paul Cacciottolo	Consultant Cardiologist - Primary Investigator	Cambridge University Hospitals NHS Foundation Trust
Prof Angela Wood	Professor of Health Data Science	University of Cambridge
Wen Shi	Research Associate	University of Cambridge
Dr Jessica Barrett	Principal Research Associate	MRC BSU, University of Cambridge
Mr Teun Petersen	Research Associate	MRC BSU, University of Cambridge

Dataset Criteria

Criteria include: data from the last 10 years; data fields describing demographic attributes, medications during admission/hospital stay, medical history of conditions, physical measurements like weight and height, procedures, death dates and more.

Real-World Data Curation of Cancer in the UK

ID: SDE_EE_PROJ_A0016

Data Access Agreement (DAA): Counter signed date: Thursday 06 October 2022 Time period: 60 months

Contract Organisation: Name: Cambridge University Hospitals NHS Foundation Trust Legal Name: Cambridge University Hospitals NHS Foundation Trust

Number of Patients: 13,000

Data sources: Cambridge University Hospitals

Funding sources: Arcturis Grant to CUH

Project Start Date: Friday 16 May 2025 Planned Project End Date: Thursday 10 June 2027

PPIE Details: The Arcturis Patient and Public Advisory Panel are involved in all aspects of the Arcturis Real-World Data Network’s research operations, including considering and providing feedback on datasets such as this and the research conducted using it.

Summary

The aim of this project is to construct a dataset of real-world oncology data that will be used to fill key evidence gaps regarding treatments and outcomes for patients living with a range of cancers in the UK. The dataset will be used to generate a range of real-world evidence-based insights in the following areas: Real-world use and sequencing of anti-cancer treatments; Identification of populations in which there is an unmet therapeutic need; Comprehensive characterisation of the use of support therapy in the treatment of cancer, and assessment of real-world clinical outcomes; Identification of key groups of patients who are under-represented in phase 3 clinical trials. This oncology dataset is part of the Arcturis Real-World Data Network, a research database for conducting observational research. Research projects which have used or are using data comprising the Arcturis Real-World Data Network are listed on their Public Register of Research.

Related links:

Arcturis | Advancing Insights Using Real-World Data

Project team

Name	Position	Organisation
Benjamin Granville	Partnerships Relations Manager	Arcturis Data Limited
Dr Lewis Carpenter	Chief Scientific Officer	Arcturis Data Limited
Dr Jamie Wallis	Health Care Data Specialist	Arcturis Data Limited
Federica Picariello	Senior Epidemiologist	Arcturis Data Limited
Filipa Tunaru	Epidemiologist	Arcturis Data Limited
Danielle Robinson	Senior Epidemiologist	Arcturis Data Limited
Bernard Cooke	Senior Data Engineer	Arcturis Data Limited
Olivia Wiper	Clinical Data Scientist	Arcturis Data Limited
Anthony Poncet	Senior Software Engineer	Arcturis Data Limited

Dataset Criteria

The anonymised, baseline and longitudinal demographic and clinical characteristics of patients living with cancer.

Testing EoE-SDE platform capabilities

ID: SDE_EE_PROJ_A0030

Data Access Agreement (DAA): Counter signed date: Friday 04 April 2025 Time period: 6 months

Contract Organisation: Name: Cambridge University Hospitals NHS Foundation Trust Legal Name: Cambridge University Hospitals NHS Foundation Trust

Number of Patients: 100

Data sources: SDE

Funding sources: NHS England

Project Start Date: Wednesday 30 July 2025 Planned Project End Date: Saturday 04 October 2025

PPIE Details: N/A

Summary

This project is providing a research environment with synthetic data to enable confirmation that the East of England SDE has suitable functionality to meet the researchers needs

Project team

Name	Position	Organisation
Liam Miller	Head Data Architect - Primary Investigator	Kent, Medway and Sussex Secure Data Environment
Emlin Jones	Interoperability Architect	Kent, Medway and Sussex Secure Data Environment

Dataset Criteria

Synthetic data for testing purposes.

Past Projects

Beta testing for the East of England SDE

ID: SDE_EE_PROJ_A0028

Data Access Agreement (DAA): Counter signed date: Tuesday 01 October 2024 Time period: 11 months

Contract Organisation: Name: Cambridge University Hospitals NHS Foundation Trust Legal Name: Cambridge University Hospitals NHS Foundation Trust

Number of Patients: 100

Data sources: SDE

Funding sources: NHS England

Project Start Date: Tuesday 01 October 2024 Project End Date: Friday 25 July 2025

PPIE Details: N/A

Summary

This project is providing a research environment with synthetic data to allow users to test and give feedback on the SDE

Project team

Name	Position	Organisation
Wai Keong Wong	Clinical Director of Digital Transformation - Primary Investigator	Cambridge University Hospital NHS Foundation Trust
Ari Ercole	Consultant in neurosciences intensive care medicine	Cambridge University Hospital NHS Foundation Trust
Sarah Burge	Director of Clinical Integration	University of Cambridge
Eckart De Bie	PhD student	University of Cambridge
Wen Shi	Research Associate	University of Cambridge
Fatemeh Torabi	Assistant Professor in Health Data Science	University of Cambridge
Rebecca Brock	Research Associate	MRC Biostatistics Unit

Dataset Criteria

Synthetic OMOP data themed on Heart Failure diagnosis

Capability testing for the East of England SDE

ID: SDE_EE_PROJ_A0029

Data Access Agreement (DAA): Counter signed date: Tuesday 01 October 2024 Time period: 9 months

Contract Organisation: Name: Cambridge University Hospitals NHS Foundation Trust Legal Name: Cambridge University Hospitals NHS Foundation Trust

Number of Patients: 100

Data sources: SDE

Funding sources: NHS England

Project Start Date: Tuesday 01 October 2024 Project End Date: Friday 25 July 2025

PPIE Details: The Arcturis Patient and Public Advisory Panel are involved in all aspects of the Arcturis Real-World Data Network’s research operations, including considering and providing feedback on datasets such as this and the research conducted using it

Summary

This project is providing a research environment with synthetic data to enable confirmation that the East of England SDE has suitable functionality to meet the researchers needs

Project team

Name	Position	Organisation
Bernard Cooke	Senior Data Engineer - Primary Investigator	Arcturis Data Limited
Danielle Robinson	Senior Epidemiologist	Arcturis Data Limited
Federica Picariello	Senior Epidemiologist	Arcturis Data Limited

Dataset Criteria

Synthetic data

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