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Advocacy in Action: Updates on the Childhood Cancer STAR Act and Childhood Cancer Data Initiative

Published on October 8, 2021 in Our Impact, Leadership Spotlight, Legislative Issues

The Childhood Cancer STAR Act and Childhood Cancer Data Initiative (CCDI) are major federal government-led initiatives that exist in part because of years of advocacy work by members of the brain tumor and childhood cancer communities. As we reflect back on Childhood Cancer Awareness Month (CCAM) this past September, we want to share updates on these initiatives as a reminder of the ongoing impact that advocacy makes possible.  

“The progress of the STAR Act and CCDI illustrate the commitment and increase in focus on research in childhood cancer,” says Danielle Leach, chief of government and community relations at NBTS. “Cancer is the number one cause of death by disease among children, and pediatric brain tumors are the leading cause of cancer-related death in this population. Therefore, seeing this increased collaboration and commitment is promising. Now is the time for advocates to continue to work together to support increases in federal research funding so this critical work can create the change we so desperately need to find cures and quality of life.”

Childhood Cancer Data Initiative 

In late 2020, following extensive input from NBTS and advocates, Congress approved funding for CCDI at $50 million per year for 10 years. Once that funding was secured, the CCDI steering committee, which includes NBTS CEO David Arons, delivered a report to the National Cancer Institute on the goals of the initiative:

  1. Gather data from every child, adolescent, and young adult diagnosed with pediatric cancer, regardless of where they receive their care. 
  2. Create a national strategy of appropriate clinical and molecular characterization to speed diagnosis and inform treatment for all types of pediatric cancers.
  3. Develop a platform and tools to bring together clinical care and research data that will improve preventive measures, treatment, quality of life, and survivorship for pediatric cancers. 

Based on these goals, the National Cancer Institute (NCI) is currently building the National Childhood Cancer Registry, which will centralize all existing data on cancer patients from birth to 39 years old and include information on their treatments, tumor types, outcomes, and post-care experiences. This registry will make it easier for researchers to collaborate and build on each others’ work, and hopefully, increase the pace of progress.

Danielle Leach

Also leveraging funding from the STAR Act, the NCI is working with Children’s Oncology Group (COG) to build a “biobank” of tumor tissue samples— a national “Molecular Characterization Protocol”— that will make it easier for researchers leading studies to acquire samples of tissue for their work. According to the NCI, this biobank will focus on cancers for which existing treatments are limited or ineffective and tissue for research is lacking and therefore will help fill a gap in the current research landscape.

As NCI Director Dr. Ned Sharpless wrote in a recent blog, these initiatives will “provide unprecedented insights into the drivers of childhood cancers and how they become resistant to treatment, as well as factors that influence the risk of treatment-related side effects…Collecting comprehensive data from as many children as possible will give researchers a more thorough understanding of how well treatments work…[and] make it easier for researchers to monitor the health of survivors of childhood cancer throughout their lives, providing further insights into the impact of cancer and its treatments.” 


The STAR Act is the most comprehensive childhood cancer bill in history. It expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, and enhances the quality of life for childhood cancer survivors. 

Since the bill was signed into law in 2018, NBTS advocates have played an active role in ensuring that the STAR Act has been fully funded at $30 million every year by asking for funding through activities like Head to the Hill and our online action alerts. Additionally, Danielle Leach sits on the Centers for Disease Control and Prevention Childhood Cancer STAR Act advisory group.

To date, funding from the STAR Act has led to:

  • Seven new research grants for “Improving Outcomes for Pediatric, Adolescent, and Young Adult Cancer Survivors.”
  • Ten new research grants for “Research to Reduce Morbidity and Improve Care for Pediatric, and Adolescent and Young Adult (AYA) Cancer Survivors.”
  • Additional funding for the CDC to expand the capacity of state cancer registries and their abilities to collect data on childhood cancer cases and trends.

More details related to these and other updates were included in a comprehensive overview put together by the Alliance for Childhood Cancer, for which NBTS serves as the co-chair of the policy committee. 

National Brain Tumor Society is committed to achieving breakthroughs in pediatric brain tumor treatment and quality of life. Join us by signing up to become an advocate today.

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