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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Pediatric Cancer Neuropsychological Needs Assessment Act Introduced in New York Legislature
A new bill introduced in the New York State Legislature by Senator Shelley B. Mayer and Assembly Member Christopher Burdick will help remove some of the barriers standing between children with cancer and the learning accommodations they need to succeed in school. The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) would require insurers to provide coverage for neuropsychological assessments for children diagnosed with cancer that affects brain development or function.
The Pediatric Brain Tumor Foundation Welcomes Dr. Sanjay Gupta to Its Board of Directors
The Pediatric Brain Tumor Foundation (PBTF) is proud to welcome Dr. Sanjay Gupta, CNN’s chief medical correspondent, to the PBTF’s Board of Directors. Dr. Gupta will bring his wide-ranging experiences in medical practice and journalism, including as associate chief of the neurosurgery service at Grady Memorial Hospital in Atlanta, associate professor of neurosurgery at the Emory University School of Medicine, and chief medical correspondent for CNN, to bear as a valuable and expert advocate for pediatric brain tumor patients, survivors, and their families.
