Collaborative Corner

It Takes a Village: How Clinicians, Researchers, and Patient Families Can Collaborate Toward Cures for Childhood Brain Tumors

A Message from the CBTTC Executive Committee Chair

As I reflect on the past year – my first as Executive Committee Chair of the Children’s Brain Tumor Tissue Consortium (CBTTC) – I am filled with gratitude for the opportunity to serve and support this diverse community of physicians, scientists, patient families and philanthropic supporters, who are all dedicated to a vision of a future free of brain cancer in children.

While our aims are universal, many of us found our way to this work along different paths.  Some have been drawn to pediatric brain tumor research from a compulsion to tackle some of the toughest challenges in medical science. Others have the lofty goal of finding cures for the incurable. And far too many of us take up this work to honor a child who has suffered or is suffering from these life-changing and sometimes fatal diseases.

My own path began in 2006, when I started my career in pediatric oncology as a fellow training at the Children’s Hospital of Philadelphia (CHOP). At CHOP, I was fortunate to provide care for many wonderful patients, and to receive training from some of the top clinicians working in this field. Yet, I often found myself feeling frustrated and dismayed by the lack of progress in developing better, less-harmful treatments for children. At the time (and still today), many treatment options came with toxic side-effects. Even when we were able to “cure” a child, those cures often came with long-term neurocognitive or psychiatric consequences. These cures were not enough! On the other end, there are so many pediatric brain and central nervous system (CNS) tumor types for which there are no cures at all.

Though I never planned to pursue a career in the lab, I found myself drawn to “translational research” – that is, the process of turning fundamental research findings into actionable medical practices and meaningful health outcomes – with the goal of finding answers to the questions I encountered in my clinical practice.  I sought to remedy the powerlessness I felt when having to tell a parent that we couldn’t do anything more.

The past 15 years have been an exciting time for genomic discovery in brain tumors.  The cost and difficulty of sequencing and analyzing tumor and normal tissue, and extrapolating insights from the related data, has fallen markedly, allowing new discoveries to occur across the cancer research landscape.  However, despite many promising breakthroughs in research, the model that underpins this work has been inherently constricting. Due to an arena dictated by competition in grant funding and a need for academic and professional publication, the pace of world-wide research has been slow.  For example, my fellowship research project, on the KIAA1549-BRAF fusion gene in low-grade astrocytomas, was occurring at the same time that at least five other labs were also working toward making the same discoveries on this gene fusion. Because of the competition to be the first “to publish on it”, none of us were working together!

Fortunately, the culture is changing.

What began as an initial idea in 2009, and launched as a multi-institutional program in 2011, the CBTTC has forged a new model for collaborative research.  The CBTTC has created an infrastructure and research platforms that allow the entire scientific community to work together and accelerate the pace of pediatric brain tumor research; making genomic and clinical data drawn from an unprecedented collection of brain tumor types and study participants available to researchers and clinicians anywhere.  Transparency, accountability, and accessibility in the development of research platforms are all inherent to the CBTTC model; as is the investment in people-power toward building a network conducive to the open sharing of information and ideas. It sounds so simple, but a clinical data-focused program like the CBTTC’s had never been done before.

Since 2012, I’ve set out to play my part in creating a culture in which research is not slowed because of lack of biospecimens, clinical observations, or infrastructure.  Joining the CBTTC’s efforts, my passion has been in making the Consortium a source for ground-breaking and meaningful discoveries that will help me to better care for my patients.

Some of my greatest strength in pursuing this passion comes from the patients and families I’ve had the privilege to meet along my own journey.

Since starting as a pediatric oncology/hematology fellow at CHOP, and now as the Director of Precision Medicine in Oncology at the Ann & Robert H. Lurie Children’s Hospital of Chicago, I’ve had the honor of caring for many babies, toddlers, children, and young adults.  I am constantly inspired and humbled by the strength, resilience, and determination I’ve witnessed in my patients and their families, especially those who lost their fight with cancer.

So many have consented to contributing tumor tissue, patient and family biosamples, and data to the CBTTC’s efforts.  Many have gone on to fundraise in support of growing and developing this Consortium. All have resolved to face childhood brain cancer with compassion, strength, and courage; pushing through the grief and sadness to bring about a future where no family will again hear those dreadful words, “there is nothing more we can do for your child’s brain tumor”.

In 2016, at the CBTTC’s annual meeting, I had the opportunity to meet Patti and Al Gustafson of the Swifty Foundation, who were attending the meeting as guests of another one of the CBTTC’s supporting foundations.  From that first introduction sprung the creation of another program of which I’m honored to be a part – “A Gift From a Child”.  This remarkable program enables and empowers families whose children have lost their battle with brain cancer to donate invaluable tumor tissue, post-mortem. This program has been developed to work hand-in-hand with the CBTTC’s infrastructure, and gives families the ability to take a final defiant stand against the diseases that have dealt them such a devastating blow.

Over the years, I have spent countless hours in the laboratory conducting experiments and mentoring students and medical interns/residents.  All of this work has been personally rewarding and fulfilling, and gives me a sense of promise that the next generation of scientists and physicians will carry out their work in a landscape that is open, accessible, and cooperative.

I truly believe the CBTTC has the potential to enable scientists to make significant, impactful findings that lead directly to helping children and young adults with brain tumors. I don’t take this statement lightly. I am not one to make grandiose statements or overinflated promises (as anyone close to me will tell you). I make decisions based on data and facts. My involvement with CBTTC gives me hope that the current generation can make a significant impact now and empower future generations to exponentially accelerate research to develop effective cures that allow children to lead a full and healthy life.

Anyone reading this has the ability to join the CBTTC’s mission.

Data scientists, laboratory researchers, and clinicians working anywhere in the world can apply for access to CBTTC biospecimens and genomic data to empower and accelerate their research and treatment efforts.

Patient families can learn how to donate tissue and other biosamples, and to contribute data toward a more complete genetic understanding of these diseases in children, hastening the discovery of cures for future generations.

Foundations, industry, and individuals anywhere can provide philanthropic support and help to raise awareness of our program, sustaining the advancement of brain tumor research and helping to save the lives of countless children the world over.

I’m immensely proud to be a part of the CBTTC’s efforts, and encourage you to join us as well. To learn more, visit 

Angela Waanders, MD, MPH

Director of Precision Medicine, Oncology; Ann & Robert H. Lurie Children’s Hospital of Chicago
Executive Committee Chair; Children’s Brain Tumor Tissue Consortium

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