While retinoblastoma (Rb) can be devastating anywhere, its effects aren’t spread equally. In countries like the UK, research has shown that nearly all children diagnosed with retinoblastoma will survive. In low-income countries however, such as those in Africa and South Asia, only half will.
This difference is highly unfair, and in order to address it, we need the full picture of which children are developing Rb, at what stage they see a doctor and what treatment they receive. One research team has brought together almost all of the doctors working on Rb around the world to share data and help to improve outcomes for children.
The Global Retinoblastoma Research Collaboration includes data from 5,500 children with Rb who were diagnosed by a doctor in 2024 (75% of the world’s cases). From this, we can see what treatments children receive and see how that affected their outcome from the disease. Previous work by the group led to major research that helped to inform how we can best treat children with Rb in the future.
To help as many children as possible from this new research, we are asking CHECT readers for your input on which questions are most important to you with your lived experience of Rb, so that the researchers can design their study.
We’re looking for input on two areas to help guide the work. At the end is a form where you can share comments and suggestions on these questions, suggest new ones and share any thoughts on this project or your experiences:
- How to improve outcomes in the UK and similar countries
Within the group of children we are studying from 2024 we have 438 children from the UK and similar ‘high-income’ countries. We’ll be looking at trends in treatment for these children such as frequency of newer therapies such as intra-vitreal (IAV) and intra-arterial chemotherapy (IAC) and look at impacts on ocular survival (saving the eye) and overall survival.
Thanks so much to previous CHECT readers who provided input to questions. Current questions we have are below. Please let us know your thoughts and suggestions using the form at the end of this page.
- Is three years long enough to say if a treatment has been successful? (we are tracking the patients for three years, similar to work we did in 2017)
- Comparisons between treatments used in UK and Europe / North America (enucleation, IAC, IVC, systemic chemo etc) and outcomes
- What percentage of adults with heritable Rb have children using PGT-M (Preimplantation Genetic Testing for Monogenic Disorders – which can ensure their children do not inherit the gene alteration)?
- Any differences in speed of diagnosis between UK and Europe / North America and if so is there anything we can learn in the UK?
- How to improve global differences
As mentioned above, in low-income countries, many children simply won’t survive Rb at all. The group are tracking what stage children present to doctors at, what treatments they are given and what public health campaigns (e.g. adverts) exist in each country.
Some questions that the researchers are aiming to look at include:
- What progress been made towards earlier presentation (getting children to see a doctor before symptoms get worse) in low- and middle-income countries?
- Have national public health campaigns worked? (For example, Cote d’Ivoire, Mali and Senegal have had funded early childhood cancer detection campaigns from 2017 versus Togo, Benin and Burkina Faso which have not had any programmes until more recently)
- Which has had more impact on the outcomes for children: age and stage at which they first see a doctor, or the treatment they receive?
- In some countries (where we have detailed data), how effective are health education / early detection programmes? And how effective are hospital treatment programmes?
Using the form below please provide feedback on these questions and let us know any additional ones you can think of.
To further help guide this work we are also looking for potential attendees for a virtual focus group. The focus group will be with a UK-based Rb expert doctor so we can work together to make the best use of the data we are collecting. To register your interest in taking part in this group, please use the form.
To respond and share your thoughts, please fill out this form by the 8 May 2026: Global Retinoblastoma Study 2024 – CHECT Reader Suggestions – Fill in form
This work is led by the International Centre for Eye Health at the London School of Hygiene & Tropical Medicine. The project leads are Richard Bowman and Didi Fabian.