Project 3. Monitoring the late effects of radiotherapy innovations in paediatric cancer patients
Project Lead: Amy Berrington (ICR)
Project Team: Aislinn Macklin-Doherty (ICR/Royal Marsden Hospital), Imogen Sawyer (ICR funded PhD student), Christophe Badie (UKHSA), PhD student at ICR, Database Manager at ICR
Objective 1 (2025 – 2030): Establish a national cohort of pediatric cancer patients using NHS linked datasets to monitor the late effects of radiotherapy innovations
Objective 2 (2027 onwards): Evaluate the risk of subsequent cancer from modern radiotherapy in pediatric cancer patients
Each year, approximately 2000 children are diagnosed with cancer in England, and they receive a range of treatments including radiotherapy, chemotherapy and immunotherapy. These treatments are continuously evolving with important changes in the last decade,s including the introduction of proton therapy and increased use of multi-modal treatment with anthracyclines. With significant improvements in surviva,l there is a need to understand the long-term effects of these treatments, including the risk of developing a second radiation-related cancer. The impact of the variety of changes in radiotherapy and chemotherapy on long-term side-effects is not yet known but the NHS national radiotherapy dataset and systemic anticancer dataset provide a unique opportunity to study this question using real-world data.
The National Radiotherapy Dataset (RTDS) was established in England in 2009 to collect consistent and comparable data from all providers of NHS-funded radiotherapy. It contains clinical information on the primary disease being treated, modality and intent of treatment, dose and fractionation. The Systemic Anticancer Dataset (SACT) includes all chemotherapy agents, number of cycles and doses and other treatments was established in 2012 and has been mandatory since 2014. These treatment datasets will be linked to the National Cancer Registration and Hospital Episode Statistics to provide comprehensive treatment and outcome information for all childhood cancer patients in England with an expected cohort of approximately 40,000 patients diagnosed since 2009. Analytical methods will include state-of-the-art causal inference and quantitative bias assessment methodology.
The findings will advance our understanding of the risk of subsequent cancers from modern radiotherapy treatment used for childhood cancer. These results can inform guidelines for surveillance or screening strategies for patients who received these treatments.
Milestones for year 1 and year 2:
M1: Obtain required approvals and submit application to NHS Digital for the national data linkage and in parallel build the database structure (Due 31/12/2025)
M2: Patient representatives meeting (Due 31/3/2026)
M3: Complete data collection, develop the linked cohort and describe the study population (Due 31/12/2026)
M4: Develop analytical datasets and conduct initial SIR analyses (Due 3/3/2027)
