Research Opportunities and Collaborative Multisite Studies in Psychosocial Hematology/Oncology

Over the past several decades, dramatic improvements in outcome have occurred for children treated for cancer. Many of these advances can be attributed to the benefits of multicenter research conducted within the context of a cooperative group clinical trials infrastructure (D’Angio & Vietti, 2001; Pediatric Oncology Group, 1992). Historically, the cooperative groups sponsored by the National Cancer Institute provided pooled expertise, centralized high-quality medical informatics resources, and access to large patient populations. This infrastructure enabled investigators to ask more focused research questions with greater statistical power as well as generalize research findings to the broader population. Although childhood cancer is by no means a rare disease, its incidence in the general population is sufficiently low that few single pediatric oncology treatment centers are likely to treat enough patients, representing an adequately homogeneous sample, to provide a robust evaluation of clinical outcomes. In many respects, multisite research has been necessary to acquire adequate sample sizes to allow appropriate statistical evaluations of treatment outcomes and generalization of these outcomes to the larger pediatric oncology population. Awareness of this fact led first to the development of small consortia of pediatric oncology centers and later to the formation of large multiinstitutional cooperative study groups to conduct controlled clinical therapeutic trials for pediatric cancer patients. Ultimately, the four major childhood cancer study groups (the Children’s Cancer Group, CCG; the Pediatric Oncology Group, POG; the National Wilms Tumor Study Group; and the Intergroup Rhabdomyosarcoma Study Group) merged in 2000 to form a single collaborative group: the Children’s Oncology Group (COG). At present, the 238 institutions that comprise the COG provide the research infrastructure for the majority of pediatric oncology clinical trials conducted in North America, Australia, and parts of Europe. Moreover, because the COG member institutions include all major university and teaching hospitals throughout the United States and Canada, the majority of children diagnosed with cancer in North America will be treated at a COG member institution with the opportunity to be enrolled on a COG protocol. An early evaluation of referral patterns to the two largest cooperative groups enumerated the observed cancer cases from the CCG and POG cancer incidence registries.