The CCSS studies individuals who survived five or more years after diagnosis of cancer diagnosed during childhood or adolescence to understand the long-term effects of their diagnosis and treatment.
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The CCSS studies individuals who survived five or more years after diagnosis of cancer diagnosed during childhood or adolescence to understand the long-term effects of their diagnosis and treatment.
The organizational structure of CCSS was designed to maintain focused leadership, while facilitating input from and collaboration among the broad multi-disciplinary team that is required to aggressively investigate the spectrum of outcomes of interest among long-term survivors.
Investigators within the Research Community who are interested in survivorship research, whether or not they are from a CCSS Collaborating Institution (i.e., those centers who contributed patients to establish the cohort), are encouraged to participate in research through one or more of six Working Groups. The Working Groups provide the primary guidancer for development and conduct of research initiatives.
The CCSS Steering Committee, the leadership body for the project, is composed of the Principal Investigator, Co-Principal Investigator, Project Director, Working Group Chairs, NCI Collaborators, Directors of the Support Facilities (i.e., Radiation Dosimetry Center, Bio-pathology Center, Statistics and Data Center, and Bio-repository Center, chairs of standing committees (i.e., Research and Publications, Education, and Resource Access/Utilization), as well as investigators with specific expertise (i.e., genetics, radiation oncology, radiation epidemiology, neurology, and biostatistics). The Executive Committee consists of a subset of the Steering Committee and provides more focused leadership regarding administration, addressing issues of potential conflicts of interest, monitoring regulatory compliance, implementing policy, strategic planning, prioritization, and liaison with the NCI.
A number of committees have been established and charged with oversight of activities including the Education Committee, which is responsible for newsletter and website content directed to study participants; Research and Publications Committee, which reviews and approves submitted analysis concept proposals and ancillary study proposals; the Resource Access and Utilization Committee, which is charged with advertising and promoting the CCSS resource to the research community; and, the External Advisory Committee, consisting of survivorship advocates and experts in pediatric oncology, epidemiology, biostatistics, and radiation oncology, who provide input into current and future activities and participate in the annual CCSS investigators' meetings. The External Advisory Committee provides: (1) feedback to the CCSS Steering Committee following annual investigator meetings regarding topics to be considered relative to research and organization; (2) input upon request from the PI regarding strategic planning; and, (3) recommendations for specific proposed ancillary research projects that the CCSS Steering Committee does not consider a good use of the resource.