A program to rapidly collect clinical data across the U.S. could lead to fewer cases of pediatric cancer, better treatments, and higher survival rates.
Cancer is the second leading cause of death in the U.S., with over 1.7 million new cases diagnosed and over 600,000 deaths each year. We have vast amounts of data on the most prevalent cancers—female breast, prostate, and lung. But the comparatively smaller numbers of pediatric cancers make building large clinical databases a challenging task.
Each year, more than 16,000 children and young adults under 20 years of age are diagnosed with cancer in the U.S. No single center will treat enough children with the same type of cancer to produce meaningful clinical data in any one geographic area. The cases are too spread out and low in volume. As a result, research progress on pediatric cancers has been slow—research that could improve treatments and save lives.
A focused, nationwide solution is necessary to get timely data and reports into the hands of scientific researchers and public health officials. Consequently, the National Institutes of Health (NIH) National Cancer Institute (NCI) is embarking on a new effort: the Childhood Cancer Data Initiative (CCDI).
Seeking rare and valuable health data
The goal is to build on the existing data infrastructure to enhance rapid cancer data collection and sharing on pediatric cases, including tissue samples—a “critically limited and valuable resource,” according to NCI.
A scientific symposium was organized by NCI in July of 2019 with participation from the cancer surveillance and research community across the country, gathering input on a wide range of issues related to pediatric cancer data—from data collection, analytical tools, and IT infrastructure to patient engagement, data sharing, and research dissemination.
An essential tool for building the childhood cancer database is the National Program of Cancer Registries Cancer Surveillance System (NPCR- CSS)—funded by the U.S. Centers for Disease Control (CDC) and managed by ICF. It is a part of the critical data infrastructure and the largest population-based disease surveillance system in the U.S., playing an important role in cancer data collection, including pediatric cancer cases.
Collaborating with the CDC, ICF has collected cancer data using the NPCR-CSS across 46 states, the District of Columbia, and three territories for 19 years and counting. The comprehensive data from this effort help cancer researchers and public health officials monitor cancer diagnoses, frequencies, locations, treatments, and survival rates so that appropriate intervention strategies can be devised and implemented.
Data collected from the NPCR-funded central cancer registries, along with cancer data collected through NCI’s SEER (Surveillance, Epidemiology, and End Results) program, is combined to create the United States Cancer Statistics. This is the most authoritative official source for cancer statistics, published through CDC on an annual basis.
A faster way to track pediatric cancer trends
As a special effort in pediatric cancer data collection, the CDC launched the Early Case Capture (ECC) of Pediatric and Young Adult Cancers pilot program in 2012. This program gathers data on childhood cancers, ideally within 30 days of diagnosis, using the NPCR-CSS infrastructure at ICF. Data quality and timely evaluation is a vital part of the effort so that lessons learned through rapid case capture can be shared with the cancer surveillance community at large.
The project also serves as a model for rapid case reporting for others conducting cancer surveillance. In 2019, CDC and ICF examined the trends in the timeliness of reporting childhood cancer data from five pilot states that consistently participated in the ECC data submission program from October 2012 through April 2019.
Our analysis showed significant overall improvements in pediatric cancer case reporting across the board. We also observed an increase in the percentage of received cases over diagnosis years and less fluctuation of the number of cases for latest diagnosis years. The percentage of cases received within a 30-day period improved significantly as well, from around 30% in 2012 to above 70% in 2019—partially due to rapid case reporting through electronic means.
Practical applications on the horizon
Through these efforts, researchers will soon learn more about the causes of childhood cancers, as well as the effectiveness of treatment options. There will be timely, relevant data to inform public health programs and support enrollment in clinical trials for new cancer treatments. The resulting learnings, once applied, could help lower the rate of pediatric and young adult cancers and increase survival rates.
The mission of building a data ecosystem on pediatric cancers is becoming a reality. The CDC shared these early successes with Congress and the cancer surveillance community, including at a recent CCDI symposium. Through this data, vital research questions can finally be addressed. Physicians and policymakers alike will soon have access to better information to fight childhood cancers head-on. With the passing of the Childhood Cancer STAR (Survivorship, Treatment, Access, and Research) Act in 2018, the cancer surveillance and research community is now empowered to make even more strides in expanding pediatric cancer research and surveillance—driving improved childhood cancer survival rates in the future.