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World Rb Registry

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   World Registry

   Treatment Resources

Daisy’s Eye Cancer Fund supports the creation of a global research and treatment community, through development of the World Retinoblastoma Registry

Due to the rarity of retinoblastoma, patients are widely dispersed. This makes it difficult to discover ethnic, population, or environmental differences in the disease.

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In the past, disease registries were criticized as ineffective and inefficient 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.

In 1998, the Retinoblastoma team at Toronto's Hospital for Sick Children (SickKids) completed the development of a secure Oracle database for the World Retinoblastoma Survey. This is currently linked to 23 retinoblastoma treatment centres on four continents. Using secure-client technology, Ophthalmologists upload detailed information on each child, each affected eye, and treatment. The system provides secure access to all images, laboratory results, and specifics of each treatment

To date, the World database contains information on over 800 patients (1,400 eyes). Through the World Survey, the Retinoblastoma Team at SickKids and other Centres of Excellence provide real-time consulting services to Ophthalmologists in other countries.

Data collected from around the world reveals the stark differences in outcomes between India and Western countries:

The average age at diagnosis was 3.5 years in India, compared to 2 years in the West;

50% of Indian children have metastases at diagnosis, compared with 15% of children at Western centres;

In India, the majority of children die of retinoblastoma, while the majority are cured in Canada and the United Kingdom;

In India, the majority of these fatal cases are found in rural, underprivileged classes.

Daisy's Eye Cancer Fund supports the development of the World Survey, and the long-term goal of this project is to establish a worldwide Retinoblastoma Tumour Registy.

To access the website of this world Survey, please click on the link below. You will be prompted to enter a username and password. Please type "demo" in both boxes.

World Survey Website

About The Eye | Retinoblastoma | Families | Doctors

Registered charity #: 111-11-33

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