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World Registry.

We support the development of a global research and treatment community, through advancement of the World Retinoblastoma Registry

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How many children in the world develop retinoblastoma?  How many of those children can access treatment?  What factors affect a child’s ability to access and complete therapy?  What treatments are available in different places, and how effective are they?

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These are some of the questions posed by doctors who care for children with retinoblastoma around the world, but until recently, there has been no reliable resource from which to extract answers. Therefore, an important first priority is expansion of the World Retinoblastoma Registry. Disease registries were criticised in the past as inefficient and ineffective health care tools. However, the development of secure database technology and high-speed Internet connectivity now provides an efficient and cost effective way to link retinoblastoma treatment centres into a global treatment and research community. A secure Oracle database has been developed by the Rb team at SickKids Hospital in Toronto, linking more than 25 treatment centres on six continents.  Doctors upload detailed information on each child, each affected eye, treatment and outcome.  An initial World Survey gathered retrospective information about 1527 children (1919 affected eyes) diagnosed between 1997 and 2001.  Analysis of this data has shown important treatment trends and global discrepancies in diagnosis and outcome.   These results are the best baseline against which to evaluate new therapies. Participants in the World Survey.

The survey demonstrated that the new International Intraocular Retinoblastoma Classification predicts prognosis better than the old ReeseEllsworth Classification.  The World Survey has presented an important opportunity to understand global impact of this rare eye cancer, and demonstrated the value of national retinoblastoma registries.   A national registry does not require expensive or sophisticated tools locally, and provides a golden opportunity for medics in all countries to become involved in collaborative research. India Data collected by the World Survey illustrates significant discrepancies in diagnosis, follow-up and outcome for children around the world. For example: The average age at diagnosis was 3.5 years in India, compared to 2 years in developed countries. 50% of Indian children had metastases at diagnosis, compared with 10% of children in the developed world; The majority of children in India die from retinoblastoma, while the majority are cured in countries like Canada, the United States  and the United Kingdom.  The majority of these fatal cases are found in rural, underprivileged communities. India has initiated development of an online registry to record and track patient treatment across the country.  This tool will generate information about incidence, stage of disease, availability of treatments, and outcomes.  Knowledge will emerge that is crucial to understanding issues such as access to care and family needs.  Our team has built the framework for this registry, which is currently hosted on a secure server in Canada, and we will study its effectiveness over a number of years.  Kenya We are working with the Kenyan Retinoblastoma Strategy Group to develop a similar database for use within a model national strategy for developing countries.  The data will provide detailed critical baselines against which to evaluate education resources, treatments and family support services that are key to improving care. This will aid formation of local initiatives that can overcome current obstacles to optimal care. World Retinoblastoma Registry We aim to expand the World Registry, to include prospective data from centre-based and national registries across the globe.  Data collected will provide researchers with information about incidence, availability of treatments, local guidelines, resources, funding, and social factors affecting acceptance of treatment and compliance.  These facts are crucial to the understanding of global incidence and distribution of retinoblastoma, treatment availability and efficiency, issues affecting access to care and family needs. The Registry data will provide detailed critical baselines to support building of regional strategies.   These baselines are also critical to thorough evaluation of treatments, social and education resources, with the goal of improving survival and vision-saving therapies. We hope this project will lead to development of a stronger global research community, and create further opportunities for collaborative research that will help move the global retinoblastoma community closer to optimal care for all affected children.

Find out more about the other three projects of the Global Retinoblastoma Strategy           Guidelines           Model Strategy for Resource Poor Countries          Research Group

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