“To the brave families considering participation in pediatric brain tumor research, we extend our heartfelt gratitude. Your courage and generosity have already made a profound impact. Together, we stand united in the pursuit of better treatments, improved outcomes, and a future where pediatric brain tumors are no longer a threat to the lives of our little heroes.”
- Jena Lilly, Executive Director of Research Operations and Strategic Planning
Unraveling the Complexity: The Rarity of Pediatric Brain Tumors
Before the formation of the Children's Brain Tumor Network (CBTN), the landscape of pediatric brain tumor research was characterized by fragmentation and isolation. Each hospital or research institution independently collected samples and conducted research on a limited number of cases. This siloed approach resulted in a lack of collaboration, coordination, and comprehensive data sharing.
Pediatric brain tumors are a rare and heterogeneous group of diseases, made up of about 30 different types and more than 100 subtypes. Each presents unique challenges in research and treatment. In some cases, an individual hospital may only treat one or a few cases each year. The rarity of these many brain and central nervous system (CNS) tumor types makes gathering comprehensive data a formidable task. By surpassing 5,000 enrollees, CBTN shatters research limitations to create a vast resource that goes beyond mere numbers. This comprehensive dataset offers researchers a unique opportunity to study these tumors and uncover crucial insights into their underlying biology.
The Journey from Consent to Data Storage
CBTN deeply understands the sensitive nature of the data shared by patients and families. Safeguarding patient privacy and confidentiality is a top priority. Before data is shared, a rigorous de-identification process is implemented, removing any personally identifiable information. This approach allows researchers to work with valuable clinical and genomic data while ensuring the complete anonymity of the donors. At every step throughout the consent process, CBTN operates with transparency and empathy, ensuring that patient families are informed and empowered.
Then, utilizing advanced cloud-based technology to analyze and visualize the new patient data, researchers around the world are equipped to accelerate scientific discoveries, clinical trial modeling, and enhanced care for children. In real-time and freely accessible, these resources expedite research tasks that previously could take years, now completing them in significantly shorter time frames, from months to weeks or even minutes.
Precision medicine, supported by the essential ingredient of ample data, paves the way for the future of pediatric brain tumor treatment. It provides personalized care meticulously designed for each patient's needs—a transformation largely driven by the integration of artificial intelligence (AI).
The Children’s Brain Tumor Network emerges as a crucial resource, not only in accelerating the discovery of cures but also as a lifeline for children currently battling these conditions. Just as it contributes to the acceleration of treatment innovations, CBTN plays an instrumental role in offering hope and improved outcomes to young patients and their families facing the challenges of pediatric brain tumors.
Jennifer Mason, Director of Biospecimen and Clinical Research Operations at CBTN, shared this message for families and children diagnosed with a brain tumor: "We won't stop. We're doing everything in our power to find better therapies and cures through the very precious donations of these young enrollees. Our goal is to shift the narrative from healthcare professionals saying, ‘There's nothing we can do,’ to being able to offer potential treatment options and hope."
Answering the Call to Action: Be the Difference
Your participation can be the catalyst for change. Whether you are a patient, a family member, a researcher, or a supporter, you have a role to play in this collective effort. Together, we can shape a world where pediatric brain tumors are no longer a devastating reality for families.
Here are some ways you can get involved:
- Consider Participation: If you are a patient or a family member, consider enrolling in CBTN. You can register at one of 34 sites: https://cbtn.org/institutions.
- Spread Awareness: Share the stories of little heroes and the importance of pediatric brain tumor research with your community. Raising awareness can ignite empathy and encourage others to join the cause.
- Support Research Efforts: If you are a researcher, collaborate with organizations like CBTN to maximize the impact of collected samples and foster an environment of collaboration. You can submit your project to access data and request specimens here: https://cbtn.org/research-resources.
- Advocate for Funding: Support and advocate for funding initiatives that fuel an open, collaborative approach to brain tumor research. You can donate to CBTN directly at: CBTNdonate.
- Volunteer and Fundraise: Get involved in local fundraising events or volunteer for organizations that support pediatric brain tumor research. CBTN is partnered with many foundations committed to improving quality of life and treatments for children with brain tumors. Check them out here: https://cbtn.org/partnerships.