Participants at the RBNET workshop

Retinoblastoma Training Network

Every year, thousands of babies and children in Africa lose their sight and their lives to the childhood eye cancer retinoblastoma (Rb). Retinoblastoma is a form of eye cancer that affects young children. Although it is relatively uncommon it is very serious, frequently leading to the loss of the eye and invasion of the brain and death (70% mortality is typical in Africa). In contrast, more than 90% of children in the western world with Rb survive, due to early diagnosis and specialist treatment.
Advanced Rb is a distressing condition seen all too often in the main tertiary eye care centres across Africa. The ophthalmologists working in these centres are desperate to diagnose and treat children early, while it is still curable. The successful treatment of Rb requires a health systems approach, working in the community to raise awareness of the signs, in tertiary centres with multidisciplinary teams (trained ophthalmologist, pathologist, oncologist, nurse), and internationally, through sharing specialist skills and protocols via North-South and South-South collaboration.

To date there have been few systematic programmes. Much of the work to date in Africa has been in Kenya in a collaboration involving the Hospital for Sick Children in Toronto, the charity Daisy’s Eye Cancer Fund and Kenyatta National Hospital, Nairobi. There is also work based in Mbarara, Uganda and Dar es Salaam, Tanzania, building Rb services there. These projects have shown that a modern, multidisciplinary approach to awareness, diagnosis and treatment increases uptake of services and saves lives.

The VISION 2020 LINKS Programme is well placed to build on the work of the Kenyan and Ugandan teams to share learning and strengthen services in Kenya, Uganda and Tanzania, with a view to subsequently scaling up the project to include other VISION 2020 LINKS that are developing children’s eye services in the Commonwealth. The network, initially with seven African partners in three countries, will provide specialist training by multi-disciplinary teams from the UK, Canada and Kenya. There will be ongoing mentorship visits over the next three years. The key activities will be an initial training workshop followed up by specialist training for the multidisciplinary team in each location.

The LINKS selected initially are:
1. Muhimbili University, Tanzania and St Thomas’ Hospital, London
2. Kilimanjaro Christian Medical Centre, Tanzania and University Hospitals Birmingham
3. Mbeya Referral Hospital, Tanzania and Altnagelvin Area Hospital, N Ireland
4. Makerere University, Uganda and Royal Free Hospital, London
5. Mbarara University, Uganda and Bristol Eye Hospital
6. University of Nairobi / Kenyatta National Hospital, Kenya and University Hospital, Coventry
7. Lighthouse Hospital, Mombasa, Kenya and Southampton University Hospital

One of the main public health interventions to improve outcome would involve education around the urgency of an abnormal red reflex. This ties in with other work funded by the CEHC using PEEK Retina to pick up abnormal red reflexes in babies with congenital cataract. This technology will potentially lead to earlier detection and treatment of Rb as well as congenital cataract.
Provision of prosthetic eyes that are implanted during the initial operation to remove the child’s eye will be included, as this increases compliance with treatment by parents of affected children. The removal of their child’s eye is often too traumatic for parents and they decline treatment when the cancer is curable, returning later when it is too late to save the child’s life.


Although Rb is a relatively uncommon condition, it has devastating consequences for affected individuals and their families. This investment in developing well structured and trained teams and programmes will lead to a dramatic improvement in the care of these children, potentially saving not only the sight but also the lives of many thousands of young children for the decades to come. We anticipate that the learning in these three countries would then be spread to other countries in the region. The systems approach described will have wider benefits in the fields of childhood blindness and childhood cancer care in Sub-Saharan Africa.

Resources Currently Available

Manual for the management of Retinoblastoma

Global Retinoblastoma Presentation 2017 Study

The ‘Global Retinoblastoma Presentation 2017’ study led by Didi Fabian and Richard Bowman from LSHTM aims to report on the presentation mode of children diagnosed with Rb throughout the world, during 2017, with special attention to intra- versus extraocular disease presentation.

More information

For more information about the Retinoblastoma Training Network please Contact us.


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