Data Modernization in Action: Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act

The STAR Project is part of the CDC’s bigger picture for data modernization.

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act is designed to advance understanding and care of cancer diagnosed in children and young adults. Through its enactment in 2018, CDC was charged to improve reporting of new cases of cancer diagnosed among children, adolescents, and young adults from birth to 29 years old. The STAR Act empowers CDC to improve early identification, rapid reporting, and epidemiologic monitoring of childhood cancer.

How Registries are Benefitting

CDC’s STAR project recruits and trains laboratories, hospitals, and health information exchanges to electronically report newly diagnosed cancer in children to central cancer registries. CDC’s Early Case Capture project showed that reporting new cases of childhood cancer to central cancer registries within 30 days was possible. A scalable infrastructure was required to expand electronic reporting to all registries. CDC’s National Program for Cancer Registries (NPCR) built a system called the NPCR National Oncology rapid Ascertainment Hub (NPCR-NOAH) to improve childhood cancer reporting. Consistent with data modernization efforts at CDC, NPCR-NOAH is a cloud-based informatics system designed to improve case finding and timeliness of reporting of childhood cancer cases to registries. Coupled with CDC’s Cancer Surveillance Cloud-based Computing Platform, NPCR-NOAH can enable cancer registries to collect, edit, and store childhood cancer data more efficiently.

Launching the Data Modernization Initiative

In 2019, CDC launched the Data Modernization Initiative (DMI) to modernize data and surveillance infrastructures at the federal and state levels. The DMI is a major effort across the agency that affects the broader public health landscape, including cancer surveillance. The goal is to make current surveillance infrastructures sustainable, connected, and adaptable. These updates will allow systems to share information faster so public health professionals can respond to public health threats more effectively.

The NPCR-NOAH System

The STAR Project is an integral part of the DMI, and the NPCR-NOAH system will make it possible to improve enrollment in childhood cancer trials, connect patients to resources faster, improve patient outcomes, and reduce the overall burden of cancer on patients and their families. CDC is working with select central cancer registries on the STAR Project, including pilot-testing NPCR-NOAH. The successes and lessons learned will help inform CDC’s data modernization efforts.