CCSG Supplement: Childhood Cancer Data Initiative (CCDI) National Childhood Cancer Registry (NCCR), University of Kentucky Markey Cancer Center - Cancer Center Support Grant

Project Abstract The National Cancer Institute (NCI) recognizes childhood cancer patients as a special and understudied population with approximately 15,000 children diagnosed with cancer in the United States (US) each year. Cancer remains a leading cause of death in children and adolescents with brain and central nervous system (CNS) tumors recently overtaking leukemia as the leading cause of cancer death among children. Survival of childhood cancer has shown improvements over time, yet many cancers remain incurable and severely burdensome for children and their families. Our ability to accurately assess the costs and understand the needs of this unique population of cancer patients remains limited due to the lack of high-quality data on a population scale. We propose to leverage the Markey Cancer Center’s extensive history of curating, managing and studying high quality childhood cancer data for impactful contributions to the National Childhood Cancer Registry (NCCR). The overall goal of this administrative supplement is to contribute existing clinical childhood cancer data at the MCC and to develop a scalable standardized data transmission protocol that will also facilitate widespread submissions of these data from other cancer centers. The first aim encompasses the submission of existing molecular, outcome, survey and birth certificate data from three ongoing population-based studies of childhood brain and CNS tumors in Kentucky. The second aim includes the submission of molecular and detailed treatment data from all childhood cancer patients seen at the MCC. The third aim will contribute molecular, including germline, treatment and outcome data from MCC patients enrolled in the Oncology Research Information Exchange Network (ORIEN) Total Cancer Care Protocol. The fourth aim will provide extensions to the North American Association of Central Center Registries (NAACCR) XML data exchange standard that will permit the seamless integration, packaging and transmission of these data to the NCCR by MCC and from all other cancer centers and cancer registries.