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:
- 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;
- 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;
- Many never reach specialized treatment centers due to family circumstances, the high cost of treatment, and a lack
of education about the disease;
- Improved outcomes are often hampered by incorrect or incomplete diagnoses, inconsistent treatment, and poor
documentation of results.
- Our Internet-based World Registry allows us to advance retinoblastoma research by connecting treatment centres
around the world in real-time.
- 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.
- 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. |