Safe People
Lead applicant organisation name	University Hospitals Birmingham

Safe Projects
Project title	PREDICT-CHD: Prediction of Risk, Evaluation of Disease Impact and Clinical Trajectory in Carcinoid Heart Disease
Lay summary	"What is Carcinoid Heart Disease? Carcinoid Heart Disease (CHD) is a rare heart condition that can happen in people with a certain type of cancer called a neuroendocrine tumour (NET). These tumours release chemicals into the blood stream that can damage the heart, especially the valves on the right side of the heart. Over time, the valves become stiff and don’t work properly. This can lead to a serious condition called right-sided heart failure. When does it happen? CHD usually develops 2 to 5 years after a person is diagnosed with a NET that has spread (called metastatic NET). Sadly, once CHD causes symptoms, it can shorten a person’s life without treatment. How is it treated? The only treatment for CHD is heart valve replacement surgery. This is a big operation and carries some risks, especially for people over the age of 70. About 10–15% of patients may not survive the first month after surgery, but for those who do, about 75% live for at least a year afterward. Why is research important? Doctors and researchers are working hard to understand: • Who will benefit most from CHD surgery • Who might be too high-risk for surgery • How the disease affects the new (replacement) valves after surgery At University Hospitals Birmingham, one of the largest groups of patients with CHD is being carefully followed up over time. Doctors are using this information, already collected as part of routine care to look for patterns that could help predict: • Who is most likely to do well after CHD surgery • Who might avoid unnecessary risks from CHD surgery What’s the goal? The ultimate goal is to give the right treatment to the right people, helping those who could benefit most from surgery, and sparing others the stress and risk of a major operation they may not survive."
Public benefit statement	Benefits to the public: 1. Better patient outcomes: • By studying CHD in more detail, especially how it progresses and who is most at risk, doctors can make better treatment decisions, such as timing cardiothoracic surgery earlier or avoiding it in very high-risk patients. • This could lead to longer survival and improved quality of life for people with NETs/CHD. 2. More accurate information for patients and families: • Research provides clearer answers to questions like: What can I expect? Should I have surgery? How long might I live? • This helps patients and families make informed choices and plan ahead. 3. Development of new treatments and monitoring tools: • Identifying markers (demographics and/or cardiac imaging) that predict poor outcomes could lead to new therapies or ways to monitor disease progression before major symptoms appear. Benefits to the NHS: 1. More efficient use of resources: • Bioprosthetic valve replacement surgery is expensive and high-risk. If doctors can better identify who will truly benefit, it avoids unnecessary operations and post-operative complications - saving time, money, and hospital beds. 2. Improved surgical planning: • Knowing which patients are at higher risk allows for better preparation and risk management, reducing emergency situations and intensive care demands. 3. Data-driven policy and guidelines: • Findings from UHB’s large patient group can inform national treatment guidelines, ensuring that care across the UK is consistent, evidence-based, and cost-effective. 4. Long-term monitoring and prevention: • Understanding how CHD affects bioprosthetic valves over time can guide follow-up care and help in designing longer-lasting treatment strategies, reducing the need for repeat surgeries/re-intervention. In summary: This work helps people with a rare but serious condition live longer and better lives, while also helping the NHS deliver safer, smarter, and more efficient care.
Latest approval date

Safe Data
Dataset(s) name	PATHWAY Research Data Hub: PWY042 dataset

Safe Setting
Access type	Project approved via Proportionate Review Process. Data released via Letter of Authorisation. All researchers have received training in the care, use and protection of personal data, enabling them to comply with their responsibilities under the Data Protection Act.

Safe Outputs
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