In September, Childhood Cancer Awareness Month draws attention to the children and their families who are affected by cancer and to the ongoing need for research, treatment advances, and support. It also provides a chance to acknowledge something more invisible. The data, which enables researchers to understand these diseases and to measure progress over time.
Childhood cancer is uncommon, since about 15,000 children and adolescents under the age of 20 are diagnosed with it each year in the United States. However, cancer is still the main cause of death from disease in U.S. children after infancy. Cases of childhood cancer are heartbreaking, but also part of great advancements in survival rates. Five-year survival rates among children diagnosed with cancer have risen from 58% in the mid-1970s to over 85% at present. Decades of research, clinical care, and analysis of cancer data have given many families hope.
Data Helps Us See Progress
Cancer data enables researchers and healthcare organizations to go beyond looking at the diagnosis of an individual and to identify patterns in larger groups of patients. This can be observed in the case of acute lymphoblastic leukemia (ALL), which is the most common type of childhood cancer. The National Cancer Institute states that the five-year survival rate for children with ALL rose from 57% in 1975 to over 92% for those diagnosed between 2014 and 2020. While overall survival rates for children and adolescents who survive cancer have improved, this progress has not been the same for all types of cancer. Some childhood cancers still have much worse outcomes, which underlines the importance of ongoing research and the need for reliable data.
When Cancer Is Rare, Every Case Matters
Researchers find it especially difficult to work on childhood cancer since the number of patients is fairly small. While there are about 15,000 new cases of childhood cancer each year, the total number of new cancer cases for all ages is over a million. Because there are fewer pediatric cases available to study, researchers must combine cancer data from hospitals and cancer centers across different geographic areas.
The National Childhood Cancer Registry (NCCR) was set up by the National Cancer Institute in order to meet that challenge. It achieves this by bringing together childhood cancer data from multiple sources, enabling research into treatments, recurrence, subsequent cancers, and long-term outcomes. In the field of childhood cancer research, information from one patient can become part of a much larger dataset, helping researchers detect patterns that would be hard to see within a single hospital or cancer center.
The Need for Data Doesn’t End with Treatment
The fact that survival rates have improved presents a valuable chance to find out what occurs to people who survive childhood cancer as they grow older. About 500,000 individuals in the United States are diagnosed with cancer before they reach the age of 20. Since this group is becoming larger, scientists are now looking more closely at the long-term effects of childhood cancer and its treatment. The Childhood Cancer Survivor Study, which is supported by the National Cancer Institute (NCI), has tracked survivors in order to gain a better understanding of the health problems that may appear years or even decades after treatment. Research has found that 60% to more than 90% of adults who survived childhood cancer develop at least one chronic health condition, and some of these effects may not appear until decades after treatment. Long-term studies have identified complications including second cancers, cardiovascular disease, hormone and growth disorders, and fertility issues. The specific risks vary based on factors such as the type of cancer, treatment received, and age at treatment.
This is why long-term follow-up data is so important. Tracking survivors over time helps researchers understand how childhood cancer and its treatments affect health throughout adulthood, and provides information that can help shape treatment and survivorship care for future patients.
Pediatric Cancer Registries Help Build the Bigger Picture
The degree of progress achieved during Childhood Cancer Awareness Month is based on a clear understanding of what is occurring among different patient groups and over time. Cancer registries form an essential element of this infrastructure, with the information gathered and kept by registry professionals being used for monitoring incidence, assessing survival, identifying trends, and aiding cancer research.
The cancer data provided by the CDC’s National Program of Cancer Registries and the NCI’s SEER Program are used by researchers and public health workers to gain an understanding of the extent of cancer throughout the country; in the case of pediatric cancers, initiatives like the National Childhood Cancer Registry are building on that basis to give an even more comprehensive view of childhood cancer and its long-term effects. The value of these datasets lies in the quality of the information they contain.
Strong Registries Support Better Cancer Data
Childhood Cancer Awareness Month provides an opportunity to appreciate how far cancer care has progressed while at the same time recognizing how much still needs to be understood. It also serves as a reminder for oncology programs that the work going on behind the scenes is important. Complete case-finding, accurate abstraction, timely reporting, quality assurance, and long-term follow-up all help to build a more robust cancer data infrastructure.
Registry Partners collaborates with healthcare organizations in order to improve oncology registry operations, deal with data gaps, assist registry teams, and ensure that the information they collect remains of high quality and complete. For when each case has something to teach us, each data point is important.
