We encourage the generation and use of robust scientific evidence to guide care.
When diagnosed early and treated effectively, childhood eye cancer is curable. No child should die, or suffer avoidable blindness because of it. Many challenges impede scientific research needed to develop evidence based care, but One Retinoblastoma World is breaking down those obstacles.
Thank you to all retinoblastoma specialists, researchers, parents and survivors who joined us at the 4th One Rb World meeting this October.
Find out more about how our community is working together to help build a bright future for all affected by childhood eye cancer around the world, and what happened when we gathered in Washington D.C.
Only 10% of children with retinoblastoma live in resource rich countries, where the majority of clinical research takes place. Most researchers work with small numbers of children, and there is very little solid evidence to support retinoblastoma care when eyes may be saved.
While more than 96% of children survive eye cancer in developed countries, many endure years of treatment, multiple relapses and moderate to severe loss of sight that is irreversible.
90% of affected children live in less economically developed countries, where clinical research is difficult due to limited resources. Most children have advanced cancer and the priority is life-saving treatment and palliative care.
Many challenges impede the development of evidence based care:
- Poor awareness among primary health workers and parents, leading to preventable blindness in developed countries and preventable death in developing countries.
- Limited access to best available evidence-based care.
- Poor collaboration between ophthalmology and oncology.
- Wide variation in “standard” treatment, and inability to compare outcomes.
- No universal agreement on pathology findings and post-enucleation care.
- No standardized outcome measures agreed by the global retinoblastoma research community to enable meaningful, impartial data analysis.
- Poor study design impeding quality prospective research.
- Numerous single-institution studies involving small numbers of children, hindering evaluation of the investigated treatment’s efficiency.
- Lack of randomised clinical trials for intraocular and extraocular Rb.
- Limited evidence to inform awareness campaigns, treatment decisions or family support programs.
