Data for Pediatric Brain Cancer Act of 2023

HR 6288, the Data for Pediatric Brain Cancer Act of 2023, establishes a federal program to create a real-world data registry for children with rare brain tumors, initially focusing on atypical teratoid rhabdoid tumor (ATRT). The bill directs the Secretary to develop and maintain a registry collecting treatment data from routine clinical practice, which can be used to form external control groups for clinical trials when randomized trials are impractical due to the disease's rarity. It authorizes $2 million for fiscal year 2025 to fund grants for academic institutions and support data infrastructure, analysis, and collaboration with experts. This registry aims to accelerate research for pediatric brain cancer treatments by providing real-world data benchmarks for trial design, directly affecting children with rare brain tumors and the research community studying them.