Related Experiment Videos
Demonstration of bias in series of retinoblastoma
M Jay1, J K Cowell, J E Kingston
1Institute of Opthalmology, University of London, UK.
Insights
A UK registry aims to track all retinoblastoma cases. The hospital series is complete but biased, showing more bilateral retinoblastoma than the general population.
Area of Science:
- Ophthalmology
- Oncology
- Epidemiology
Background:
- Retinoblastoma is a rare pediatric eye cancer.
- Accurate incidence data is crucial for understanding disease burden and planning services.
- Previous data may lack complete ascertainment across the United Kingdom.
Purpose of the Study:
- To establish a comprehensive national registry for retinoblastoma in the UK.
- To achieve complete ascertainment of all diagnosed retinoblastoma cases.
- To analyze the characteristics of retinoblastoma cases, including laterality.
Main Methods:
- Compiling a register of retinoblastoma cases across the United Kingdom.
- Utilizing multiple sources for case ascertainment: hospital records, regional cancer registries, and pathology reports.
- Comparing case proportions (bilateral vs. unilateral) between a specific hospital series and national data.
Main Results:
- Ascertainment is complete for cases from St Bartholomew's and Moorfields Eye Hospitals.
- National ascertainment for retinoblastoma remains incomplete.
- The hospital series shows a higher proportion of bilateral retinoblastoma compared to the country as a whole, indicating a potential bias.
Conclusions:
- A UK retinoblastoma registry is in development, with ongoing efforts to improve national case ascertainment.
- The hospital series provides valuable, though potentially biased, data on retinoblastoma laterality.
- Further research is needed to address ascertainment gaps and confirm national epidemiological trends.
Abstract:
A register of retinoblastoma is being compiled with the aim of complete ascertainment of all cases with a recorded diagnosis of retinoblastoma in the United Kingdom. Sources of ascertainment include patients seen at St Bartholomew's and Moorfields Eye Hospitals, cases recorded in regional cancer registries, and pathology reports. Ascertainment of the Hospital series is complete, but that of the rest of the country is still incomplete. Comparison between the proportions of bilateral and unilateral cases in an age cohort in the Hospital series and the country as a whole shows that the Hospital series is biased towards an excess of bilateral cases.