Data Use Register
The Data Use Register summaries projects on the platform.
Active Projects
MVP Pilot - Heart Failure use case
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
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: 11,000
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:
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 |
| Dr 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 |
| Alycia Perkins | Epidemiologist | Arcturis Data Limited |
| Dr Joanne Winter | Senior Epidemiologist | Arcturis Data Limited |
| Matthew Martin | Senior Data Engineer | Arcturis Data Limited |
| Dr Joseph Cronin | Senior Machine Learning Researcher | Arcturis Data Limited |
| Joseph O'Reilly | Associate Head of RWE | Arcturis Data Limited |
| Keiran Tait | Biomedical Data and Image Analyst - ML Analytics | Arcturis Data Limited |
| Dr Robert Dürichen | Head of ML Analytics | Arcturis Data Limited |
| Dr Shammi Luhar | Senior Epidemiologist | Arcturis Data Limited |
| Steven Soutar | Medical Statistician | Arcturis Data Limited |
Dataset Criteria
The anonymised, baseline and longitudinal demographic and clinical characteristics of patients living with cancer.
Testing EoE-SDE platform capabilities
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.
Real-World Data Curation of Autoimmune diseases in the UK
Real-World Data Curation of Autoimmune diseases in the UK
ID: SDE_EE_PROJ_A0033
Data Access Agreement (DAA): Counter signed date: Wednesday 12 March 2025 Time period: 60 months
Contract Organisation: Name: Cambridge University Hospitals NHS Foundation Trust Legal Name: Cambridge University Hospitals NHS Foundation Trust
Number of Patients: 1,300
Data sources: Cambridge University Hospitals
Funding sources: Arcturis Grant to CUH
Project Start Date: Friday 16 May 2025 Planned Project End Date: Saturday 04 August 2029
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 aims to construct a comprehensive research dataset on autoimmune diseases, using data from routine clinical care in secondary healthcare settings. The dataset will include detailed disease-specific severity metrics, patient outcomes, and healthcare resource utilisation data. The dataset will be used to undertake observational research projects including, but is not limited to, feasibility studies, natural history studies, comparison between trial and real-world data, comparative effectiveness studies, Post-Authorisation Safety Studies, causal inference methodological development, prognostic modelling and patient stratification. This autoimmune 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:
Project team
| Name | Position | Organisation |
|---|---|---|
| Alycia Perkins | Epidemiologist | Arcturis Data Limited |
| Dr Lewis Carpenter | Chief Scientific Officer | Arcturis Data Limited |
| Dr Jamie Wallis | Associate Head of RWE | Arcturis Data Limited |
| Dr 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 |
| Dr Joanne Winter | Senior Epidemiologist | Arcturis Data Limited |
| Matthew Martin | Senior Data Engineer | Arcturis Data Limited |
| Dr Joseph Cronin | Senior Machine Learning Researcher | Arcturis Data Limited |
| Joseph O'Reilly | Associate Head of RWE | Arcturis Data Limited |
| Keiran Tait | Biomedical Data and Image Analyst - ML Analytics | Arcturis Data Limited |
| Dr Robert Dürichen | Head of ML Analytics | Arcturis Data Limited |
| Dr Shammi Luhar | Senior Epidemiologist | Arcturis Data Limited |
| Steven Soutar | Medical Statistician | Arcturis Data Limited |
Dataset Criteria
The anonymised, baseline and longitudinal demographic and clinical characteristics of patients living with autoimmune diseases.
Past Projects
Beta testing for the East of England SDE
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
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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