UK Registry for Thymic Epithelial Tumours
Research type
Research Database
IRAS ID
344196
Contact name
Eleni Karapanagiotou
Contact email
Research summary
UK Registry for Thymic Epithelial Tumours
REC name
North West - Haydock Research Ethics Committee
REC reference
24/NW/0360
Date of REC Opinion
12 Dec 2024
REC opinion
Favourable Opinion
Data collection arrangements
The UK Registry for Thymic Epithelial Tumours (TETs) is a national database created to improve understanding and treatment outcomes for patients with thymic epithelial tumours, a rare form of cancer affecting the thymus. The registry will securely collect and store information on patients’ diagnoses, treatments, and health outcomes to help doctors and researchers study how different treatments affect patient health over time. By gathering this data from hospitals across the UK, the registry aims to improve care guidelines, develop better treatment options, and support further research into this rare disease.
Data collected includes basic information such as age, gender and ethnicity, as well as specific details about the tumour type, treatments received, and outcomes. Only authorised researchers will have access to this information, and all patient data will be handled confidentially and securely. Patients currently receiving follow-up care will be invited to participate in the registry, while data on past patients will be included with special permissions in place to protect privacy. The registry is supported by ThymicUK, a charity that has helped ensure patient involvement and feedback throughout the planning process.
Research programme
The UK Registry for Thymic Epithelial Tumours (TETs) supports a national research effort to improve care for people with thymic epithelial tumours, a rare type of cancer that currently has limited treatment data and research. The registry is a collaboration involving specialists in oncology, surgery, and research, along with key support from ThymicUK, a patient and carer charity dedicated to improving outcomes for those with thymic cancer. By collecting information from patients across the UK, the registry will help researchers study how different treatments affect health and outcomes over time. Through this registry, researchers aim to answer important questions about disease progression, survival, and treatment effectiveness. The database will also be used to inform clinical guidelines, which could improve care for future patients. Patients and carers have been directly involved in the planning of the registry, and their feedback has highlighted the need for more research in this area. Moving forward, the registry will prioritise patient privacy and confidentiality while working toward its goal of advancing care and understanding for individuals affected by thymic epithelial tumours.
Research database title
UK Registry for Thymic Epithelial Tumours
Establishment organisation
Guy's and St Thomas' NHS Foundation Trust
Establishment organisation address
Guy's Hospital
Great Maze Pond
SE1 9RT