Mar 12 2024


3:00 am - 4:30 pm

Congressional Town Hall: Data for Pediatric Brain Cancer Act

Join us March 12, 2024 at 3 p.m. ET to learn more and ask questions about the “Data for Pediatric Brain Cancer Act of 2023,” a new bill in the U.S. House of Representatives that would establish a first-of-its-kind Pediatric Brain Tumor Real-World Data Registry Program.

Introduced by Reps. Ami Bera, M.D. (D-CA) and Mike Kelly (R-PA), this landmark legislation for the pediatric brain tumor community would boost researchers’ data collection efforts, establishing real-world data sets that can be used to accelerate new treatment discoveries and clinical trials. 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.

During this 75-minute town hall, you’ll hear from Rep. Bera; Harsh Patel, Rep. Bera’s Health Policy Advisor; pediatric neuro-oncologists Dr. Michael Prados of UCSF and Dr. Ashley Margol of USC; Dr. Adam Resnick, Director, Center for Data-Driven Discovery in Biomedicine at CHOP; and Rachel Kreiger, patient mom, advocate and founder of Ollie’s Orchestra.

This virtual town hall is a must for anyone passionate about pediatric health, especially advocates, families directly impacted by ATRT and other pediatric brain tumors, and members of the research community.


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