Frequency and outcomes of pulmonary valve replacement by valve type in England and Wales over 20 years

Frequency and outcomes of pulmonary valve replacement by valve type in England and Wales over 20 years image

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Data Use Register - full project summary

Safe People

Lead applicant organisation
University Hospitals Birmingham NHS Foundation Trust

Safe Projects

Project Title
Frequency and outcomes of pulmonary valve replacement by valve type in England and Wales over 20 years
Lay summary
In this project, we will study data from patients who have undergone pulmonary valve replacement, a procedure to treat abnormalities in the heart valve that controls blood flow to the lungs. These abnormalities are usually present from birth, and patients may receive treatment through surgery or a catheter-based procedure. The aim is to understand how different types of valve replacements affect patients over time, particularly when and how often they require further interventions.

We will use data from England and Wales, held by NICOR and NHS England. These data will be securely accessed by the research team through the West Midlands Secure Data Environment in a pseudonymised format, ensuring individual patients cannot be identified.

The findings will inform the design of a future multi-centre clinical trial involving adults with congenital heart disease who need pulmonary valve replacement. This trial will recruit participants from across the UK and Ireland and will aim to determine which type of valve offers the best long-term outcomes. Ultimately, the goal is to reduce the number of reinterventions patients need over their lifetime and improve the quality and consistency of care for people with congenital heart disease.
Public benefit statement
Babies born with congenital heart disease (CHD) often require early intervention, but the condition continues to affect them throughout life, with repeated procedures in childhood, adolescence, and adulthood. Each intervention carries risks, including death, and impacts physical and mental health, education, and employment. Unsurprisingly, reducing the frequency of reoperations was identified as a Top 10 national research priority for children and adults with CHD.

Pulmonary valve replacement (PVR) is the most common reoperation in adults with CHD in the UK. If one type of valve prosthesis lasts longer than another, fewer procedures may be needed over a lifetime. This would reduce the burden on patients, families, and the NHS.

This project will help us understand differences between valve types and inform the design of a multi-centre randomised controlled trial. The trial will aim to identify the most durable valve prosthesis, improving long-term outcomes for people living with CHD.
Latest Approval Date
03/06/2025

Safe Data

Dataset(s) name
SDE035

Safe Setting

Access type
West Midlands SDE trusted research environment

Safe Outputs

Link
Not yet published.