Utilizing State Cancer Registries to Inform State‐Based Cancer Control Efforts for Children

Comprehensive cancer control plans (CCCP) provide a framework to guide cancer efforts based on a local assessment of the cancer landscape. The plans are generated from data reflecting the population of the catchment area with the goal of improving cancer prevention and control locally. Plans can include specific recommendations and strategies for cancer prevention, early detection, treatment, survivorship, and health policy [1]. There are currently 65 CCCPs in the United States, including plans from individual states, territories, and tribal organizations. Though children are part of the catchment areas for CCCPs, childhood cancer is often overlooked as a local need, as few plans include goals specific to childhood cancer [1]. Because the cancer incidence, treatment, prognosis, and duration of time in survivorship vary significantly between adults and children with cancer, it is important to consider childhood cancer uniquely within a given context. To better understand the prevalence of childhood cancer objectives within CCCPs nationally, we evaluated all CCCPs available on the Centers for Disease Control and Prevention website as of January 2025 [1]. There were 65 CCCPs in total produced by all 50 states, District of Columbia, six Pacific Island jurisdictions and Puerto Rico, seven tribes and tribal organizations, and the Cancer Council of the Pacific Islands. Only 55.4% (n = 36) of plans specifically mention childhood cancer, while 29% (n = 19) of these plans designate a specific section or paragraph devoted to childhood cancers [1]. Almost all the plans discuss cancer survivorship in some capacity, but only 40% (n = 26) plans mention childhood cancer survivorship specifically [1]. There was geographic variation with states in the Middle Atlantic region most likely to mention pediatric cancer (100%, or 3/3), followed by the Mountain division (87.5%, or 7/8) [1, 2]. In the South Atlantic Region, including South Carolina, 44% (4/9) of plans included childhood cancer. Only 28% (2/7) of territorial plans include pediatric cancer objectives [1, 2]. These data underscore the point that both nationally and locally, the inclusion of childhood cancer efforts as an important component of the overall cancer control efforts is not widely recognized. The reasons for this are likely complex. CCCPs tend to emphasize primary and secondary prevention strategies, and these are less relevant to childhood cancer [1]. CCCPs may prioritize the most common cancers, and childhood cancer has a lower incidence and causes relatively few deaths in comparison to cancers among adults. The lack of a local champion to advocate on behalf of the importance of childhood cancer may also be a distinguishing factor regarding the integration of childhood cancer into CCCP. Cancer registry data are often leveraged to answer specific questions related to childhood cancer, including risk factors for mortality nationally [3, 4] or in a given context [5-7]. However, because registry data are population-based, it can also be utilized to study population trends in cancer metrics (e.g., incidence, survival, mortality) over time, as we illustrate in our inaugural state report [8]. These trends, in turn, can help direct local cancer control efforts for children. In South Carolina specifically, childhood cancer was first introduced into the CCCP in 2022 with a single objective to enhance the quality of life for child, adolescent, and young adult patients with cancer from diagnosis through treatment and survivorship [9]. Below, we highlight the process of engaging stakeholders to examine state childhood cancer data trends over 25 years with the goal of creating a more robust childhood cancer section within the CCCP. We describe an action-oriented example in South Carolina illustrating how local registry data can be used to inform pediatric cancer objectives within CCCPs. Since 1996, South Carolina has maintained population-based cancer data on all incident cancers in the state, including those diagnosed in children [10]. Because registry estimates reflect the entire population at risk (in contrast to hospital-based studies or cohort studies), the data are uniquely valuable to illustrate trends in metrics over time for a given geography. Recognizing that these data were historically underutilized in the pediatric population, South Carolina leaders in pediatric oncology, public health, and epidemiology formed a state taskforce [11] to review our registry data to comprehensively study childhood cancer patterns over 25 years yielding South Carolina's inaugural report on childhood cancer [8]. We examined childhood cancers diagnosed among those 19 years of age and younger between 1996 and 2020 and documented trends in cancer incidence, survival, and mortality, in addition to a specific section dedicated to the growing population of childhood cancer survivors in South Carolina. This enabled us to collectively identify state-level data-driven priorities for children with cancer to expand the South Carolina Comprehensive Cancer Control Plan. The following three major areas were identified: (i) changing cancer incidence patterns by cancer type that warrant additional investigation, (ii) a growing population of childhood cancer survivors needing long-term follow-up, and (iii) persistent disparities with lower 5-year relative survival among non-Hispanic Black (80%) and Hispanic children (83%) as compared to non-Hispanic White children with cancer in South Carolina (86%). A major milestone following the inaugural childhood cancer report was the commitment from the South Carolina Department of Public Health to update the childhood cancer report every 5 years as part of the state's CCCP. Efforts to update the report will be led by childhood cancer-focused stakeholders, including pediatric oncologists, epidemiologists, and public health officials. This will enable ongoing assessment of state needs and priorities for cancer in children, providing data to direct childhood cancer priorities within the South Carolina Comprehensive Cancer Control Plan. Further, this report led to new recommendations for the South Carolina Comprehensive Cancer Control Plan devoted specifically to goals pertaining to childhood cancer, with key examples highlighted in Table 1. Lastly, this work led to the creation of the South Carolina Survivorship Collaborative housed under the South Carolina Children's Hospital Collaborative [12] to formally align the state's children's hospitals and the South Carolina Department of Public Health in ongoing, long-term efforts to thoroughly address the needs of childhood cancer survivors statewide. Far too often, the local impact of childhood cancer is not reflected in CCCPs in states or territories [1]. We have described a case study of one potential solution, showing that joining forces with a team to analyze statewide childhood cancer data provided a data-driven approach to highlight the statewide importance of childhood cancer and inform the CCCP. Population-based cancer registry data are uniquely able to identify population trends over time and help direct local cancer priorities, though it is underutilized for this purpose within pediatric oncology. Our work highlights the value of analyzing and reporting cancer registry data to inform CCCP objectives for childhood cancer. The authors would like to acknowledge additional members of the South Carolina Childhood Cancer Taskforce, including Stephanie Chiodini, Stuart Cramer, Elizabeth Crouch, Virginie Daguise, Judy Fulmer, Rahul Ghosal, Bezawit Kase, and Henry Well, and the efforts of the South Carolina Cancer Alliance, including Anca Dumitriu and Nicole Echols. Special thanks to Olivia Baumgarten and Karly Dubs for collecting patient/family narratives for the report. The authors declare no conflicts of interest. The data that support the findings of this study are available on request from the corresponding author. A data use agreement would be required. The data are not publicly available due to privacy or ethical restrictions.