Bipartisan Data for Pediatric Brain Cancer Act cosponsored by Kelly

To improve treatments for children facing brain cancer, U.S. Rep. Mike Kelly (R-PA) on Nov. 8 proposed a bipartisan bill to improve the collection and use of specific data that would support pediatric cancer research.

“It is our hope that this legislation will improve both patient treatment and patient outcomes,” Rep. Kelly said.

Specifically, the Data for Pediatric Brain Cancer Act of 2023, H.R. 6288, which Rep. Kelly cosponsored with bill sponsor U.S. Rep. Ami Bera (D-CA), would amend the Federal Food, Drug, and Cosmetic Act to provide for a Pediatric Brain Tumor Real-World Data Registry Program, which would be focused on bolstering and expanding activities related to the collection, sharing, and use of real-world data for children with brain tumors, according to the text of the bill.

“Randomized clinical trial designs are hard to use in rare disease patient populations due to the inability to find large study populations,” explained Rep. Kelly. “This legislation seeks to use atypical teratoid rhabdoid tumors as a stepping stone to work towards using real-world data registries as external control cohorts for pediatric brain tumor clinical trials.”

Under H.R. 6288, new and innovative approaches and technology for data collection, integration, and analysis would be considered, says the bill’s text, and support for data integration, bioinformatics, and statistical analyses would be provided, among other provisions.

H.R. 6288 has been endorsed by the Children’s Cancer Research Fund, the Pediatric Brain Tumor Foundation, the National Brain Tumor Society, Hope4ATRT, and the Pediatric Neuro-Oncology Consortium Foundation.

“By leveraging real-world data, we are equipping researchers with the tools they need to make progress in understanding and treating pediatric brain cancer,” Rep. Bera said. “A tremendous step in the right direction for rare diseases, this will help enhance patient access and holds the potential to usher in groundbreaking treatments.”

The measure has been referred for consideration to the U.S. House Energy and Commerce Committee.