A collaborative effort between The Preston Robert Tisch Brain Tumor Center and Duke Children’s Hospital removes traditional systemic barriers for families to access complex pediatric brain tumor treatment. As a result, children and families worldwide have access to potentially life-saving care at Duke.
“The first step is getting kids to us,” says David M. Ashley, PhD, FRACP, MBBS (Hons), pediatric neuro-oncologist and director of The Preston Robert Tisch Brain Tumor Center. “Money and geography shouldn’t be barriers for any child to receive timely treatment — so we created a program that provides families with financial resources and support to get the care they need.”
Once at Duke, children have access to innovative clinical trials and expert pediatric neurosurgery and neuro-oncology teams equipped to diagnose and manage advanced pediatric brain tumor cases.
“We’re successfully treating brain and spinal cord tumors in children and young adults, which are deemed untreatable by other centers,” says Gerald A. Grant, MD, pediatric neurosurgeon and chair of the Department of Neurosurgery.
A destination of hope
Supported by the generous philanthropy of the Business Executive Committee of The Preston Robert Tisch Brain Tumor Center, Ashley and his team established Destination Hope. In just a few years, the program has helped over 250 families cover the cost of travel, lodging, and clinical care.
Sarah Davis, LCSW, facilitates the program. “I connect with each patient’s family after their case review. We access what they need to arrive and mobilize to make it happen,” says Davis.
Support continues long-term. Some families travel to Duke for routine care or check-ups. Others travel for second opinions, to confirm a diagnosis, or to get care not offered by their local centers. “We want to help any family come to us, regardless of their circumstances,” says Davis.
In-house clinical trials
The team strives to break down traditional barriers to discover rapid innovations and novel treatments. As such, patients have access to promising trials and treatment options for rare and aggressive pediatric brain tumors.
“One of our strengths is clinical and translational research,” says Grant.
The team has executed a unique “in-house” trials program that targets pediatric brain tumors with leading-edge immune-based therapies such as oncolytic virus therapy and anti-cancer vaccines.
“We recently completed a phase 1b vaccine trial, testing recombinant polio-rhinovirus immunotherapy for recurrent pediatric high-grade glioma, which is continuing to a national setting based on our findings,” says Daniel Landi, MD, pediatric neuro-oncologist.
In addition, Duke participates as a clinical trial site for the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and the Collaborative Network for Neuro-oncology Clinical Trials (CONNECT). Duke’s CONNECT and PNOC trials focus on molecular tumor sequencing, targeted therapies, and immunotherapies to treat aggressive pediatric brain tumors.
Grant also directs a translational blood-brain barrier laboratory identifying ways to improve the delivery of novel brain tumor therapies.
To refer a patient, call Pediatric Neuro-Oncology at 919.668.6288 or Pediatric Neurosurgery at 919.684.5013.
Collaborative, complex care
Grant says “Hail Mary” passes are often his team’s catch. “Some patients come to us after being told their diagnosis is all bad, but maybe it’s not as bad as they think.” Grant and team successfully treat patients seeking alternative answers and innovative minimally invasive surgical strategies.
Pediatric brain tumors are the second most common pediatric malignancy and the most common solid childhood cancer, causing significant morbidity and mortality.
“It’s time for pediatric brain tumors to get more attention,” says Grant. “Our care delivery model brings together a collaborative research and treatment team to achieve the best possible outcomes for children.”
At Duke, The Preston Robert Tisch Brain Tumor Center collaborates with esteemed pediatric specialists from Duke Children’s Hospital, Duke Cancer Institute, and other groups who are readily available to discuss cases. “We’re a 24/7 operation to provide access to kids and families in and outside of North Carolina,” says Grant.