efforts to improve retinoblastoma care.
The Need
Raising Awareness
Global Rb Strategy
Guidelines
Model Strategy for
Resource Poor
Countries
World Registry
Research Group
Rati's Challenge
Rb care in Africa
Retinoblastoma Book
World Rb Citizen Award
As a result, care is ad hoc, varying
Little is known about the long term psychological effects of repeated anaesthesia or enucleation, or the effect of sustained treatment on family relationships. Access to medical care varies widely, even in resource-rich countries. Opinions vary on the most effective methods of improving awareness, diagnosis and referral to specialist treatment centres.
Little data is available regarding epidemiology, access to treatment, response and survival. Many centres struggle to maintain accurate patient records, and communication between centres within a single country is frequently poor.
All of these challenges are particularly acute in resource-poor countries, where most children fail to access timely, appropriate care, and many who do are lost to follow-up.
Randomised, controlled clinical trials are the only certain way to measure success of a particular approach to cancer care, and have become the gold standard of cancer research. However, reliable clinical trials frequently require hundreds or thousands of participants.
This is because the researchers must find small, but important, differences between the new and standard approaches being compared in the trial. In order to show a 10% (1:10) improvement in effectiveness of a new chemotherapy protocol, the trial must contain 1,000 patients. To show a 5% (1:20) improvement, 4,000 patients would be needed.
For this reason, an international, multi-centre research group is the only effective way of investigating new and existing approaches to care of a rare condition like retinoblastoma, from before diagnosis through treatment and into adulthood.
We are initiating the development of a World Retinoblastoma Research Group, which will have greater capacity to pursue effective international retinoblastoma clinical trials. Data gathered from our World Retinoblastoma Survey and Registry provides reliable control group data against which to validate novel approaches to retinoblastoma care.
Only one controlled multi-centre trial currently exists to investigate therapy of retinoblastoma confined to the eye. The Toronto Multi-centre Clinical Trial assesses effectiveness of combining cyclosporine with the standard three drug chemotherapy regimen (carboplatin, etoposide, vincristine) and focal therapy (laser/cryo), to combat multi-drug resistance associated with the current standard treatment. Side effects of treatment are also investigated.
In the absence of published data regarding the effectiveness of current standard therapies, data gathered from the World Survey and resulting prospective World Registry has formed a control group for the Multi-centre Trial. Children in this control group receive(d) the same three chemotherapy drugs and focal therapies as those used in the Toronto Protocol, but without the addition of cyclosporine to combat multi-drug resistance.
The Toronto Protocol is currently being used in Canada, Ireland and India. Hospitals in China and Singapore are also investigating participation in the Trial.
Country by country, the small number of children diagnosed with retinoblastoma makes it difficult to validate new and emerging approaches to retinoblastoma care. Addressing the health care of retinoblastoma families through novel collaborative research projects will overcome this challenge of rarity, and ultimately improve care for all affected children and their families.
Find out more about the other three projects of the Global Retinoblastoma Strategy:
Best Practice Guidelines
Model Strategy for Resource Poor Countries.
World Registry
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