Effectively treating retinoblastoma depends on early diagnosis. Providing specialized training to physicians in developing countries is only part of the solution.Providing financial support to families for travel and medical costs means many more children will receive adequate treatment.

Establishing sustainable programs in developing countries like India is a cost-effective way to provide optimal vision care.
The Problem
Country by country, retinoblastoma is a rare children's cancer. It occurs in 1/15,000 live births, or about 25 new cases per year in Canada. Patients are widely dispersed, so collaborative research is essential to understand and effectively treat this disease. Developing countries continue to experience rapid population growth coupled with poor socioeconomic conditions and meager government resources.

Our Approach

In designing our program, we considered several important factors that come from our clinical and research experience:
  1. In developed countries, early diagnosis results in 95% of affected children having treatable, early-stage RB. Almost 70% are cured by a combination of surgery and chemotherapy;
  2. In developing nations such as India, the majority of affected children live with less access to primary care, suffer from late diagnosis and frequently fatal outcomes;
  3. Many never reach specialized treatment centers due to family circumstances, the high cost of treatment, and a lack of education about the disease;
  4. Improved outcomes are often hampered by incorrect or incomplete diagnoses, inconsistent treatment, and poor documentation of results.
  5. Our Internet-based World Registry allows us to advance retinoblastoma research by connecting treatment centres around the world in real-time.
  6. As well, the registry provides clinicians in developing countries with the means for real-time consultation with Retinoblastoma experts in Toronto and other Centres of Excellence.
  7. It is cost-effective to treat children at regional centres in their home country. For example, chemotherapy treatment for one child costs over $40,000 in Toronto, and less than $4000 in Chennai, India. Bringing a child to Toronto from a country in Africa for full treatment costs in excess of $110,000.
Our Solution
Through basic research, the Toronto team has unraveled abnormalities in retinoblastoma genes. This resulted in new, specific treatment approaches that are more effective and less toxic to the children.When implementing health care programs in a global setting, genetic differences between ethnic groups may affect treatment outcomes. Different levels of exposure to cancer causing agents in the environment may also affect the incidence of diseases such as retinoblastoma. As well, patients' tolerance to treatment may also vary from one country or population group to another.

Until now, our study focused on patients in Toronto. To improve outcomes for all affected children, we have initiated a Worldwide Trial that includes some of the biggest centers in the world. At the Apollo Specialty Hospital and Sankara Nethralya Eye Hospital in Chennai, India a new 3-year study will provide facts that allow comparison between Canadian and Indian populations. Outcomes will allow us to suggest the most effective treatment regime for the Indian population.The lack of local resources will improve as India develops economically.

Eventually, the country will develop internal research and development programs. This health care progress can be improved through collaboration with developed counties like Canada. International collaboration would provide new opportunities for retinoblastoma research and treatment that benefit all patients with this disease.