Childhood cancer patients' access to cooperative group cancer programs

Abstract BACKGROUND The Children's Oncology Group (COG), a merger of the Children's Cancer Group (CCG) and the Pediatric Oncology Group (POG), conducts clinical trials for the treatment of childhood cancer. To assess the feasibility of developing a nationwide childhood cancer registry, the authors attempted to determine whether COG could serve as a resource for identifying all children with cancer. METHODS A consolidated file of children age < 20 years who were diagnosed with cancer between 1992–1997 and registered with either CCG or POG was linked with records from the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) Program. Age‐specific registration rates and age‐adjusted registration rates (AARR) were calculated overall and by year of diagnosis, gender, race/ethnicity, stage of disease at diagnosis, and type of cancer. RESULTS Of 10,108 children age < 20 years with cancer who were identified by the 11 SEER registries between 1992–1997, 5796 were registered with CCG or POG. The AARR was 71% for children age < 15 years, 24% for adolescents ages 15–19 years, and 57% for children age < 20 years. Registration rates were stable over the years studied, varied by geographic region, and were found to be higher among children with more advanced disease. Registration rates were highest for children with leukemia, hepatic tumors, and renal tumors, and were lowest for carcinoma and retinoblastoma. CONCLUSIONS The results of the current study demonstrate that not all children with cancer are registered by the cooperative groups; however, a national registry program can be achieved by supplementing cases identified through COG with data collected by statewide population‐based cancer registries. Such a partnership would be mutually beneficial, allowing COG to achieve 100% registration of children with cancer and, for the statewide cancer registries, improving the timeliness of case‐finding and follow‐up information for cancer outcomes. Cancer 2003;97:1339–45. © 2003 American Cancer Society. DOI 10.1002/cncr.11192