Childhood Cancer registry
Having reliable statistics for childhood cancer is an essential component of planning the capacity needed for treatment and support of children with cancer. The existence of a comprehensive registry that accurately captures all cases of childhood cancer is a vital base to provide these statistics.
In the absence of an accurate registry being provided by the public sector, the Childhood Cancer Registry was started in 1987 by the South African Children’s Cancer Study Group (SACCSG) so that data could be collected on cancer in the paediatric population for statistical research.
The registry existed for more than 20 years without financial support until 2009, when CHOC began funding the cost of the salaries of a data manager and part-time data capturers, as well as computer hardware, and training.
The registry has been hosted over time by various paediatric oncology units in the country; for the last 15 years it has been kept at Stellenbosch University. This central repository of data is provided by hospital-based registries throughout the country, recording data on all patients presenting to paediatric oncology services. Data also comes from some of the paediatric oncologists in private practice. The registry may not, however, capture data on children who die without being seen at a hospital, and those treated by private oncologists and other paediatric subspecialists, such as neurosurgeons.
The registry has resulted in a greater knowledge of the incidence rates of cancer, the demographics and the ages of the children afflicted, the subtypes and stage of malignancies, and their outcomes on children. In addition, it allows doctors to compare treatment protocols to determine which are the most optimal. “The collected information can assist in scientific analysis, planning and research,” explain Prof Daniela Stefan and Prof David Stones in an article on the registry published in the South African Medical Journal.
National Cancer Registry
According to Stefan and Stones, until 2011 the registry was the main source of statistical data for epidemiological studies. Another source of cancer information was the National Cancer Registry, a pathology-based registry of the National Health Laboratory Service, established in 1986. However, one of the shortcomings of this database was that since children were on the same registery as adults, child-specific data may have been missed. Also, clinical data were seldom communicated in full to the laboratories, due to concerns regarding disclosure of private information.
But in 2011 the Department of Health decided to revitalise the National Cancer Registry and now all cases of cancer must be reported. The SACCSG believe that the childhood cancer registry will still remain a useful and significant repository for specific paediatric data that will, along with the National Cancer Registry, adequately address the needs of researchers in paediatric oncology.