Alex's Lemonade Stand Foundation for Childhood Cancer

Cancer is a reportable disease worldwide, which means when it is diagnosed the law mandates that it must be reported to public health officials. 

Tracking cancer had a slow start—in 1929 Yale-New Haven Hospital in Connecticut established the first hospital registry. It was 1956 when the American College of Surgeons required a cancer registry for approved cancer treatment programs. In 1973⁴³ the Surveillance, Epidemiology, and End Results (SEER) Program launched at the National Cancer Institute, and it started tracking a representative portion of the population. The National Cancer Registrars Association was established a year later as an effort to create consistency and professional training in the field. And then in 1992 the United States Congress passed the Cancer Registries Amendment Act, establishing a registry program within the Centers for Disease Control and Prevention. Congress encouraged states to establish their own registries, and by 2001, the registry, known as the National Program of Cancer Registries (NPCR), was collecting data from all 50 states (who had mandated cancer reporting from hospitals).⁴⁴

The state registries track a wide range of data-demographic, primary treatment type, specific diagnosis, geography, residence, age, patient status, and deaths. All of this critical information can help support public health and oncology researchers as they look for trends in long-term survival (a key indicator treatments are working), in incidence rates (by age, location, and cancer type), and other demographic factors. It can influence state public health programs and funding for childhood cancer and the allocation of community resources.⁴⁵

This is how tracking cases of childhood cancer works:⁴⁶

STEP 1
At diagnosis and before the end of the first cycle of treatment, the hospital registrar enters information about the patient, their diagnosis, and their treatment into their database. That information is then sent to the central cancer registry in the hospital’s state. 

STEP 2
The state registry verifies the information from the hospital and if the patient happens to be a resident of another state, the registrar will send that information to the state of residence.⁴⁷

STEP 3
Once a year, the central state registries send information on the cancers diagnosed in their state to the Centers for Disease Control and Prevention. There, it is collated and used to produce the U.S. Cancer Statistics (USCS), the official federal source. 

STEP 4
In the USCS, central state registry data is combined with data surrounding cancer deaths from offices of Vital Statistics. 

The process takes time as registrars work to verify, code, and ensure information is accurate. The data on childhood cancer incidence is 3-4 years behind the current year—so for 2026, the most recent data available is from 2023. Death and mortality data is just 2-3 years behind current time. 

SEER also tracks and analyzes cancer rates but uses the data from approximately 18 core registries that represent 48% of the U.S. population.  Both USCS and SEER are complementary, not competing, and allow for trend tracking, data comparisons, and modeling of future trends. For example, the American Cancer Society uses SEER and USCS data on an annual basis to model and forecast current rates for the year.⁴⁸