September Childhood Cancer Foundations Spotlight-title-h1

September Childhood Cancer Foundations Spotlight

The Kids First Data Resource Center (DRC) is pleased to spotlight the following Kids First DRC Foundation Partners dedicated to supporting childhood cancer research, team science, and collaborative data sharing practices. The Kids First DRC mandate is to accelerate research on childhood cancer and structural birth defects.

One childhood cancer type included in the Kids First DRC portal is pediatric brain tumors. Brain tumors are the most common solid tumor, the most common cancer, and the most common cause of cancer death in infants and children 0-14 years. — Central Brain Tumor Registry of the United States (CBTRUS) • More than 4,300 central nervous system tumors are diagnosed each year in children and teens. — Central Brain Tumor Registry of the United States (CBTRUS)

Pediatric brain tumors are the leading cause of disease-related death in children. Unlike most adult cancers, the causes of pediatric brain tumors remain largely unknown, and decade-old therapies have remained mostly unchanged. Such therapies are often not tumor-specific and can impart toxicities to the developing nervous systems of children. Furthermore, many tumors are inoperable or cannot be fully removed surgically due to their location in sensitive areas of the brain, further limiting options for the care of patients. To address these challenges, clinicians and researchers have embraced the emergence of sequencing technologies and deep molecular characterization of tumors to define novel, targeted approaches and individualized therapies. However, harnessing such data-driven approaches has remained a challenge due to limited availability and accessibility to datasets and the absence of shared-discovery platforms that can empower large-scale integration of datasets for worldwide access and cross-disease analyses.

Learn how to access the pediatric cancer data available on the Kids First Data Resource Portal on the Kids First DRC Webinar on September 26th, 2018. Register here.




Why they partnered with the Kids First  DRC


Christopher Court Foundation

"We have supported the CBTTC since its inception and the Kid's First Initiative is the next step in connecting researchers with the data and fostering collaboration."

Dragon Master Foundation

"The Kids First Data Resource Center is a vital next step forward to understand structural birth defects and pediatric cancer and where those two communities may have overlap for clinical research. There is so much that we still need to understand about where things go wrong and how these conditions develop. Looking at them from new perspectives and with greater genomic insight will help us make discoveries that can help these kids live longer and have higher quality of life. Dragon Master Foundation is proud to help develop this resource for use by patients, researchers, and clinicians."

Kortney Rose Foundation

"The Kortney Rose Foundation, as a founding research partner of the CBTTC, is excited to be a part of the evolution into utilizing pediatric data in a broader spectrum to accelerate better treatments and cures for all pediatric diseases," said Kristen Gillette, Founder/Executive Director."

Pediatric Brain Tumor Foundation

“Collaborating for cures is key to the Pediatric Brain Tumor Foundation’s research strategy, which is why we’re so excited to support the Kids First Data Resource Center,” says Robin Boettcher, President and CEO of the Pediatric Brain Tumor Foundation. “As a leading nonprofit funder of pediatric brain tumor research over the past three decades, we’ve seen firsthand the impact that working together can have in the fight against childhood cancer. By coordinating research efforts, pooling resources and sharing data across multiple organizations, children and teens with brain tumors and other cancers will have a fighting chance for a future free of side effects and recurrence.”

St. Baldrick’s Foundation

“The St. Baldrick’s Foundation and the Kids First Data Resource Center have in common a very important goal: to see that no research data goes to waste – that all data that can be used for childhood cancer research is shared with – and accessible to – researchers everywhere.”

Swifty Foundation

"One of our primary initiatives is to accelerate research through collaboration. The DRC is a giant step forward in providing a platform and resource that facilitates and enhances collaboration among researchers, patients and foundations. We were given our “marching orders” by Michael Gustafson when he developed his master plan to cure cancer. He made the decision to donate his body to research so that others would not have to go through what he and his family had to endure. Since that time the Swifty Foundation has been focused on supporting and funding initiatives that create a rich environment for research to flourish. We are proud to support the DRC as another piece in the puzzle that is curing pediatric cancer."

The Grayson Saves Foundation

"The Kids First Data Resource Center is the most innovative, robust imitative that will make a difference in the ugly world of Cancer."

The Nicholas Conor Institute

“ As one of the initial supporting organizations of the Gabriella Miller Kids First Research Act, we are thrilled upon belief by the progress this program has made and with a true sense of urgency. The Kids First Data Resource Center is an essential component to its success and the near-term impact this program will have on children touched by cancer and/or structural birth defects.”

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