Do you know someone who had cancer? And a child with cancer? Although you may answer “yes” to one or both of these questions, many types of cancer are classified as rare diseases. My name is Francianne and have begun my young investigation career studying acute leukemia in children. The subtype myeloid leukemia – which in turn encompasses a huge number of categories – affects a relatively small number of children, with an estimated incidence of 30-50 children per million Brazilians. While some of them have a diagnosis and appropriate treatment, many do not.
To perform a strong association analysis and draw precise conclusions, sometimes we need a large number of cases (keeping in mind that this is an overall statement). Studying rare diseases becomes effective when we create collaborative groups and combine the cases. In Brazil, we established a multicentric network to perform high-quality research in pediatric oncology. Our combined success results in scientific discoveries that are translated into the clinics with the practical management of the patients.
Several centers in Central America and North Africa have also established regional collaborative groups of childhood cancer treatment, similar to the cooperative groups in Europe and North America that have driven progress towards improving outcomes in pediatric oncology. Besides these groups from low-middle income countries share similar challenges in caring for children with cancer in their regions, these youngsters also face problems like remaining undiagnosed and no access to treatment.
Collaboration with international institutions is welcome to achieve the success of the national cancer program. The concept of ‘twinning’ in which a cancer center from a developed country collaborates with another center in a developing country has been successful in some countries. These partnerships generally include mentoring, education, and some form of funding. The goal is to join forces to find sustainable solutions that improve care sharing expertise and promoting self-sufficiency. It is a good way to start until we learn to walk alone.