Advocacy Alert

U.S. Reps Bera and Kelly Introduce Bill to Establish First-of-Its-Kind Data Registry for Pediatric Brain Tumor Patients

Today, U.S. Representatives Ami Bera, M.D. (D-CA) and Mike Kelly (R-PA) introduced the Data for Pediatric Brain Cancer Act of 2023. This bipartisan bill would establish a first-of-its-kind Pediatric Brain Tumor Real-World Data Registry Program, strengthening crucial data collection efforts to support pediatric brain cancer research.

Because pediatric brain tumors are considered a rare disease, with more than 120 types and subtypes, identifying enough patients who are eligible to participate in a clinical trial is often challenging.

The Data for Pediatric Brain Cancer Act of 2023 would boost researchers’ data collection efforts, establishing real-world data sets that can be used to further their work on clinical trials. By using patient data from routine clinical practice, researchers can develop external control groups for single-arm trials that could improve families’ access to more treatment options and establish important benchmark results on treatment efficacy.

Under the proposed legislation, a pilot registry would focus on pediatric patients with atypical teratoid rhabdoid tumors (ATRT), exceedingly rare embryonal brain tumors that carry a poor prognosis for children. If successful, the program would expand to other types of pediatric brain tumors.

Atypical teratoid rhabdoid tumors (ATRT) are exceptionally rare, making them a challenging subject for research. A federal program aimed at collecting data for use in clinical trials could significantly enhance research efforts, potentially leading to breakthroughs in understanding and treating this aggressive cancer. Families affected by ATRT have shown unwavering commitment, dedicating their time and resources to support research and find a cure. Dr. Ryne DeBo, Pediatric Brain Tumor Foundation’s Vice President of Research

The Pediatric Brain Tumor Foundation enthusiastically endorses the Data for Pediatric Brain Cancer Act of 2023 and urges all advocates to join in our effort to educate members of Congress about its benefits. To learn more about the legislation and how you can reach out to your lawmakers, email Mike Henry, the Pediatric Brain Tumor Foundation’s Director of Advocacy, at [email protected] or fill out our advocacy interest form below.


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