With the recognition of the need for systematic surveillance of long-term survivors of childhood cancer, efforts in 1990 were begun to form a consortium of institutions and investigators to establish a mechanism to facilitate survivorship research. After a series of organizational and planning meetings, a group of 26 contributing clinical pediatric centers from the United States and Canada was selected to form the CCSS consortium. These centers were chosen based on criteria that included the size of the patient population, investigator expertise and interest in issues relating to childhood cancer survivorship, previous history of successful multi-institutional collaborative research, and geographic location. Over a 2-year period, the consortium investigators developed and agreed on the objectives of the project; eligibility criteria for study participants; and study design, methods, and outcomes. In addition, pilot studies were conducted to demonstrate the feasibility of constructing a retrospective cohort and to generate preliminary data regarding resources required to successfully complete an undertaking of this scope. Subsequent submission and peer review of a grant application resulted in funding by the National Institutes of Health in 1994. Since the original establishment of the CCSS, the project Coordinating Center has been relocated from the University of Minnesota to St Jude Children's Research Hospital, and with the current expansion of the study cohort, four new contributing institutions have been added recently ( and ).
Childhood Cancer Survivor Study Consortium Institutions and Responsible Investigators
Childhood Cancer Survivor Study consortium centers.
Provided in is the organizational structure of the CCSS. Both the population of childhood cancer survivors and most of the scientific input are derived from the contributing/participating centers. Investigators interested in survivorship research, whether or not they are from a contributing CCSS center, can participate in one or more of nine working groups, which provide the primary focus for development and conduct of research initiatives. The CCSS Steering Committee represents the leadership body for the project and is composed of the Principal Investigator, Project Director, Working Group Chairs/Co-Chairs, NCI Collaborators, and Directors of the support facilities (ie, Radiation Physics Center, Biopathology Center, Data and Statistics Center, and Bio-repository Center). Recently, the Steering Committee was expanded to invite several investigators who are early in their academic careers to participate in leadership activities of CCSS within a mentored environment. A number of committees have been established and charged with oversight of activities related to education of survivors, analysis and publication of results from CCSS, and access and utilization of the CCSS resource. Lastly, an external advisory committee, consisting of survivor advocates and experts in pediatric oncology, epidemiology, biostatistics, and radiation oncology, attend and participate in annual CCSS investigators' meetings and provide input into the current and future activities.
Childhood Cancer Survivor Study organizational structure. NCI, National Cancer Institute.