The below registry includes details on the research projects hosted on and using the Wessex Secure Data Environment.
DAA: Data Access Approval
DSA: Data Sharing agreement
| Data field | Definition |
| Project name | Describing Overall Survival and First-Line Treatment Patterns in High-Risk Invasive Urothelial Bladder Carcinoma Post-Resection Patients |
| Lay summary | Details from 78 patients are being used in this study, using routinely collected historic data that has been de-identified before it is entered into the SDE.
By bringing together different types of data, from multiple departments, in a single consistent dataset using the SDE, we will be able to analyse the ‘real world’ approaches to patient care taken by our clinical teams. In doing so, we will be able to benchmark our compliance with national gold standard treatment options to ensure that patients are receiving the best care possible. In addition to highlighting options for immediate changes in patient care pathways, we anticipate that this will allow for new research hypotheses to be generated for future prospective research studies. |
| Unique identifier | SDE_WXS_PROJ_52 |
| Contracting organisation name Trading name * | University Hospital Southampton NHS Foundation Trust |
| Legal name of contracting organisation | As above |
| Website links to find more information | Bladder Cancer – HRA approval |
| Date of counter-signed DAA/DSA | 17 January 2025 |
| Period of DAA | End date 31 July 2026 |
| Data field | Definition |
| Project name | A global retrospective chart review to characterise the clinical course of warm autoimmune hemolytic anemia |
| Lay summary |
Autoimmune haemolytic anaemia (AIHA) is a rare condition where the body’s immune system mistakenly attacks and destroys its own red blood cells, causing severe anaemia. The most common form, warm AIHA, makes up 60-70% of cases in adults. Doctors typically treat it first with corticosteroids; if this doesn’t work, other treatments like removing the spleen or using immunosuppressive drugs are considered.
This global study will look at medical records of patients with warm AIHA to understand how they’re treated in everyday practice, how effective these treatments are, and what complications may arise. The study’s findings could help doctors improve treatment strategies for this condition. |
| Unique identifier | SDE_WXS_PROJ_1 |
| Contracting organisation name Trading name * | BC Platforms |
| Legal name of contracting organisation | As above |
| Website links to find more information | https://www.bcplatforms.com/ |
| Date of counter-signed DAA/DSA | 7 February 2025 |
| Period of DAA | 3 years |
| Data field | Definition |
| Project name | Diagnostic test accuracy study of methods which identify surgical Necrotising enterocolitis – Surgical NEC Study |
| Lay summary | Necrotising enterocolitis (NEC) is a devastating disease which causes severe bowel inflammation resulting in babies becoming critically unwell. It mainly affects premature babies (who can be born as early as 22 weeks) in the first few weeks of life. A quarter of babies don’t respond to intensive care treatment and require surgery to remove bowel which has died to prevent them from getting sicker. Sadly, about a third of the most unwell babies don’t survive and those that do have a high incidence of significant long-term health problems.
Deciding which babies will benefit from surgery is challenging and there are no objective methods used to do this currently. Surgeons must weigh up the risks and benefits of performing major surgery on a tiny baby in the knowledge that surgery itself may cause harm. This uncertainty causes delays in performing surgery. Those that have a delay are more likely to have a poor outcome. We want to identify the most effective objective method to identify which babies need surgery earlier than they are identified currently. This will allow earlier surgical treatment saving lives and preventing long term poor health in prematurely born babies. We will do this using a large pre-existing dataset of infants with NEC (n~700) taken from multiple neonatal units across the country. This includes clinical, laboratory, radiograph and vital signs data at high frequency (1 minute intervals for vital signs) from admission to discharge. Infants within the dataset either underwent surgery or had medical treatment alone. The accuracy of each method identified in previous research will be determined using this large dataset to determine which method is most effective. |
| Unique identifier | SDE_WXS_PROJ_ |
| Contracting organisation name Trading name * | University Hospital Southampton NHS Foundation Trust |
| Legal name of contracting organisation | As above |
| Website links to find more information | https://www.nature.com/articles/s41390-024-03292-3 |
| Date of counter-signed DAA/DSA | 23/01/2024 |
| Period of DAA | End date 30/04/2026 |