Children’s Leader Named Key Advisor to National Brain Tumor Society Initiative March 19, 2014

Washington, DC - Roger J. Packer, MD, Senior Vice President of the Center for Neuroscience and Behavioral Medicine and the Gilbert Distinguished Professor of Neurofibromatosis at Children’s National Health System, has been named a key advisor to a National Brain Tumor Society program that seeks to carry out research and drug development to overcome barriers to better treatments for children with pediatric brain cancer.

The program, called Project Impact: Driving Discovery to a Cure for Pediatric Brain Tumors, will focus on public policy and research to make headway into areas of brain cancer care where there has been little progress for decades.

More than 4,000 children are diagnosed with a brain tumor each year. While the average five-year survival rate for all children with a malignant brain tumor is 66 percent, the chances for long-term survival in more aggressive high-grade gliomas (HGG) are less than 20 percent.

Unfortunately, little progress has been made in research and improving survival rates in HGG over the past 50 years, Dr. Packer said. Project Impact is trying to change that.

Dr. Packer is one of the organizers of Project Impact, "which is attempting to bridge the gap between what we are learning in the laboratory to the therapy we give to children," he said, "to develop personalized, biologically-based treatments and cures for children with brain tumors."

"We can dramatically change the outcomes for children with this type of tumor," Dr. Packer said. "There is general agreement we are on the threshold to make tremendous molecularly-based progress, which will advance care for children. This is not pie-in-the-sky. This is reality."

"There is recognition that high-grade gliomas are not the same tumors that occur in adults, and even among children, there are different genetic forms of high-grade gliomas. Molecularly, they require different kinds of therapies," Dr. Packer added.

Dr. Packer is among three members appointed as advisors to Project Impact. Project Impact will work with the biopharmaceutical industry, government agencies, clinicians, researchers, other nonprofit organizations, and coalitions to identify ways to change policy and practices that will improve clinical trial design and hasten approvals of new therapies. Besides Dr. Packer, other Project Impact advisors are from St. Jude Children’s Research Hospital and Cincinnati Children’s Hospital Medical Center. Through Project Impact, the "National Brain Tumor Society is creating a bold initiative to address a number of key, interrelated barriers to better pediatric are – specifically brain tumor – drug development," said N. Paul TonThat, CEO of the National Brain Tumor Society.

"To take on such an effort, we needed to have the top minds in the field working together to support and guide the initiative," TonThat said. "Dr. Packer’s experience and standing the field will be extremely beneficial in navigating a path to better treatments for children suffering from brain tumors," TonThat adds.

Though pediatric brain tumors are the second most common form of childhood cancer, HGG only make up 450 – 650 of those cases annually. Despite the devastating effects, the small population size creates many challenges to effective drug development for pediatric HGG.

The National Brain Tumor Society is committed to funding for up to $500,000 annually for five years, to identify drugs that will work in HGG to move into clinical trials.

"We do have barriers from getting new drugs to children with these rare, but in many cases, lethal diseases," Dr. Packer said. "We need to work carefully with drug companies and government agencies so they understand the desperate need, the need to move forward, at the same time, we need to better understand what level of scientific evidence they need to approve a drug to use in a child."

Contact:Emily Hartman or Joe Cantlupe at 202-476-4500.


About Children’s National Health System

Children’s National Health System, based in Washington, DC, has been serving the nation’s children since 1870. Children’s National’s hospital is Magnet designated, and is consistently ranked among the top pediatric hospitals by U.S.News & World Report and the Leapfrog Group. Home to the Children’s Research Institute and the Sheikh Zayed Institute for Pediatric Surgical Innovation, Children’s National is one of the nation’s top NIH-funded pediatric institutions. With a community-based pediatric network, eight regional outpatient centers, an ambulatory surgery center, two emergency rooms, an acute care hospital, and collaborations throughout the region, Children’s National is recognized for its expertise and innovation in pediatric care and as an advocate for all children.

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