The overall aim of this collaboration is to improve the quality and availability of data on cancer in children, particularly in countries with limited resources. To attain this ambitious goal, scientists from IARC and St. Jude are developing three areas of action.
Implementation in countries
Countries that are initially selected to join this initiative will be guided through the implementation of international cancer registration principles and standards during site visits, national workshops, and follow-up, according to the profile and registration situation of each country. The aims of implementation are to develop country-specific guidelines, set targets, and develop a follow-up plan, in line with international standards and with the involvement of national stakeholders. Consultations are under way in Mexico and are starting in three other countries.
After an assessment of education needs, educational content will be developed in collaboration with national experts, members of the GICR network of regional trainers. These trained trainers will then disseminate their acquired expertise in the registration of childhood cancer within their region and globally.
Selected challenges will be analysed to strengthen the quality and availability of data on cancer in children. The initial areas of research are:
- barriers to data sharing and the development of best practices;
- classification of childhood central nervous system tumours, and registration of non-malignant central nervous system tumours;
- the financial burden borne by families affected by cancer in a child; and
- quantification of the cost of registration of cancer in children.