On June 5, President Donald Trump signed the Childhood Cancer Survivorship, Treatment, Access and Research Act, which aims to support pediatric cancer research by expanding the collection of patient biospecimens and records, improving surveillance, and investigating pediatric survivorship.
On June 5, President Donald Trump signed the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, comprehensive legislation that aims to broadly support pediatric cancer research by expanding the collection of patient biospecimens and records, improving surveillance, and investigating pediatric survivorship.
“It's very exciting legislation. It's not focused on small questions; it's focused on building and improving our ability to do pediatric cancer research,” says Donald Parsons, MD, PhD, of Texas Children's Hospital in Houston. He adds that the Act includes provisions for large-scale, long-term data and sample collection that “can be the foundation for all types of different pediatric cancer research—studying individual diseases, studying late effects of therapy, trying to correlate clinical outcomes with particular treatments or biological features of the patients.”
One such provision expands the NCI's efforts to collect biospecimens for patients enrolled in NCI-sponsored clinical trials, and to compile clinical, biological, and demographic information on children, adolescents, and young adults with cancer. The Act also authorizes grants for state cancer registries to track pediatric cancer incidence, and for research on pediatric cancer survivorship.
Although overall survival rates are now greater than 80%, pediatric cancers remain difficult to study, says Tara Henderson, MD, MPH, of The University of Chicago in Illinois, because their relative rarity, combined with a large number of cancer subtypes, means there aren't many patients with any particular type of cancer.
“We really need the NIH and the government to support the research in those patients,” she says, and to support continued collaboration among pediatric oncologists. “Part of the reason we've been able to make the advances we have is because we have a very high-functioning cooperative group called the Children's Oncology Group, supported by the NIH.”
The STAR Act follows another piece of legislation in childhood cancer—last August, Congress passed the Research to Accelerate Cures and Equity (RACE) Act of 2017, which requires companies developing cancer drugs for adults to develop those drugs for children based on the drug's molecular target rather than cancer type.
Henderson hopes the STAR Act will support research on the biology of long-term side effects of treatment—for example, why some patients and not others develop cardiomyopathy. She also emphasizes the need for more research on older pediatric patients, who haven't benefited as greatly from new treatments as younger patients.
Additionally, Henderson and Parsons are excited about expanding the database of biospecimens collected from patients enrolled in NCI-sponsored clinical trials.
“Those samples are worth their weight in gold—they're biological samples that are matched to rigorous clinical data for patients who have been uniformly treated on clinical trials, such that you can really dive into the practical aspects of the biology of childhood cancer,” Parsons says.
“If we can start collecting [data] in a centralized location, then any one researcher is not going to be limited to the patients that they see at their hospital,” Henderson adds. “This will enable scientists to ask very broad-reaching questions with access to biological samples where they can have good [statistical] power to answer these questions.” –Catherine Caruso
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