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Anyone who has ever helped a kid with a science project knows the importance of conducting a well-designed and carefully executed study. Pretty pictures and clever display boards will not yield that coveted A+; the youngster must first keep scrupulous records and engage in some elementary statistical analysis.
Scientists seeking cures for tumors of the central nervous system know the importance of creating innovative studies backed by high-quality statistical science. Under the leadership of St. Jude Children’s Research Hospital, a prestigious group of hospitals and research institutions are working together to do just that.
St. Jude is the operations and scientific center of the Pediatric Brain Tumor Consortium (PBTC), which was formed by the National Cancer Institute in 1999. Most children with primary brain tumors in the United States go to St. Jude or one of the other nine PBTC institutions for diagnosis and treatment. These institutions pool their intellectual resources and statistical data to identify superior treatments for children with brain cancers and to further understand the biology of central nervous system tumors. Larry Kun, MD, chair of St. Jude Radiological Sciences, leads the PBTC steering and scientific committees.
Before the PBTC was conceived, James Boyett, PhD, chair of St. Jude Biostatistics, saw the need for a central location from which to manage millions of pieces of data. To coordinate the activities of institutions spread across the nation, he developed an Operations and Biostatistics Center for the PBTC. Boyett first became interested in multi-center trials back when computers were the “size of refrigerators and as slow as Christmas.” Today he serves as principal investigator of the PBTC and executive director of its high-tech nerve center, the Operations and Biostatistics Center.
Boyett and his team have created a secure electronic means of moving neuro-imaging files. “These are huge, encrypted files,” he says. “We collect them from the PBTC institutions and send them to the physical neuro-imaging center established at Harvard, where they are evaluated. This technology has allowed us not only to collect pictures but also to collect the data behind them and to do it all electronically.”
Operations and Biostatistics Center staff members also masterminded a novel data transfer system that ensures smooth collaboration. “We’ve established a nearly paperless multi-center data management system where all the PBTC hospitals have laptops with software we’ve created and set up to securely collect the protocol data for analysis and reporting,” Boyett says.
All of these technological advances help scientists take the methods they learned in elementary school to a higher level. “A protocol arises from a question,” Boyett explains. “It’s up to us to figure out how best to answer that question. First and foremost, the study has to have a good statistical design so that patients who consent to participate in the research truly contribute to a better understanding of these diseases. From there, it must be conducted to a T so as to get as close as possible to answering that question.”
Thanks to St. Jude leadership and collaborations, scientists studying brain tumors are moving ever closer to cures. And that rates an A+ for sure.
Reprinted from autumn 2004 Promise magazine
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