It’s 9 a.m. on a recent rainy morning in Seattle. Julie Park, MD, has her shoes drying out by the heater in her office at Seattle Children’s Hospital. She’s on a conference call with doctors and statisticians from Germany, Canada, the U.S. and Europe, and they’re discussing neuroblastoma, the most common solid tumor in children younger than 1 year of age.
Park leads the Neuroblastoma Committee for the Children’s Oncology Group (COG), the world’s largest organization devoted to childhood and adolescent cancer research. COG is supported by the National Cancer Institute (NCI) and unites more than 8,000 experts at more than 200 leading children’s hospitals, universities and cancer centers across North America, Australia, New Zealand and Europe.
Gathering data through collaboration
Researchers in COG work together to conduct research and they share findings before they’re published in a journal, which sets this group apart from other medical disciplines. Experts say COG is needed to collect large amounts of data because there are small numbers of children with cancer.
“It’s not like we have 20,000 young people with breast cancer,” said Park. “We have 10 patients with neuroblastoma each year at Seattle Children’s and 600 in the entire United States. You need numbers to really show the significance of things like new treatments.” The shared data set that Park is now working with colleagues to establish has information on some 12,000 kids. “That’s pretty amazing,” she said.
Research collaboration a ‘tradition’ in pediatric cancer community
Doug Hawkins, MD, associate division chief of hematology/oncology at Children’s, can’t say enough about the importance of COG in his line of work. “Pretty much everything that we know about childhood cancer and every improvement that has happened in the last 50 years is due to cooperative groups,” he said.
Hawkins first learned about the importance of research collaboratives in 1993 during his hematology/oncology fellowship in Seattle. “It’s the tradition in pediatric cancer research. We were all trained to do this work by collaborating and we all believe that clinical trials and collaboration across institutions is the key.”
Thanks to COG, children’s cancer has gone from a virtually incurable disease 50 years ago to one with a combined five-year survival rate of 80 percent today. There are nearly 100 active clinical trials open in COG at any given time. The trials include treatment for many types of childhood cancers, studies aimed at determining the underlying biology of these diseases, and trials involving new and emerging treatments, supportive care and survivorship.
“We’d still be seeing high mortality rates if we didn’t have COG,” said Hawkins, who is the principal investigator for COG activity at Children’s and serves as chairman of the Soft Tissue Sarcoma Committee. “For every type of cancer, with rare exceptions, we saw improvements in survival starting in the early 1960s. You can trace survival rate and mortality improvements to cooperative groups for any type of cancer, pick any of them.”
COG, private groups, patients help fund clinical trials
Hawkins said COG has also played a crucial role in providing funding for pediatric cancer clinical trials. A mere two to three percent of the current $29 billion National Institutes of Health budget is earmarked for childhood cancer research.
“Conducting a clinical trial costs between $4,000 to $8,000 per patient and NCI reimburses hospitals at a rate of $2,000 per patient,” said Hawkins. “The funding is inadequate to do the work.”
Enter St. Baldrick’s Foundation and CureSearch, two organizations that provide additional per-patient reimbursement to hospitals to help keep clinical trials up and running. It’s still not enough to bridge the gap, but Hawkins said that support from these groups is essential to making progress in research. “It’s hard to imagine we would have made the strides we have without collaboration and philanthropic support,” he said. “It’s hard to imagine how we’d do that in the future.”
Local foundations are making a difference, and Hawkins’ patients even help fund research. Jake Steiner, who will soon starting college after battling Ewing sarcoma, raised $75,000 in August at a bocce ball tournament held in his parent’s back yard. Kat Tiscornia has raised nearly $120,000 through “Kat’s Crew” since her treatment began in March. In addition, money raised by Ben Towne Foundation is now covering 80 percent of research staff salaries and research materials for clinical trial development at Ben Towne Center for Childhood Cancer Research at Seattle Children’s Research Institute.
The future of pediatric cancer research
New collaborative groups with a philanthropic component have emerged in recent years, including a Stand Up To Cancer – St. Baldrick’s Dream Team that will focus on immunotherapy, treatments that use the body’s own immune system to fight disease. Michael Jensen, MD, of Ben Towne Center for Childhood Cancer Research, is a lead investigator on this Dream Team project.
And while it’s clear that COG has saved lives and helped to improve the lay of the land in pediatric cancer treatment, Hawkins said there’s still work to be done. “There are still children who die from cancer,” he said. “Many kids are cured, but there are lots of long-term side effects. The next question for us to tackle is: Are we, in 2013, able to make the same kinds of improvements as we saw in the 1950s, 60s and 70s?”
Seattle Children’s has a distinguished history with COG and was one of the original hospitals in one of the first collaborative groups formed in the late 1950s. John Hartmann, MD, former division chief of hematology/oncology, was one of the founding members of the Children’s Cancer Group, a forerunner to COG. Ronald Chard, MD, former clinical director at Children’s, was also very involved with the Children’s Cancer Group on pediatric leukemia studies. Today, Seattle Children’s is one of the select institutions participating in COG phase 1 clinical trials, which enables the hospital to offer the newest therapies for children with cancer.
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