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Pediatric Brain Tumor Foundation Joins Count Me In’s Brain Tumor Project as Advocacy Partner

03/23/21

The Pediatric Brain Tumor Foundation (PBTF), the world's leading nonprofit dedicated to kids battling brain cancer, is honored to become a nonprofit advocacy partner for Count Me In’s Brain Tumor Project, a new approach to generating the most comprehensive brain tumor database.

“There are more than 100 types of childhood brain tumors in need of a cure, with prognosis and treatments varying greatly across tumor types,” says Courtney Davies, PBTF President and CEO. “To accelerate the discovery of targeted therapies, the Pediatric Brain Tumor Foundation is committed to strengthening the scientific community’s understanding of the unique complexities shaping every brain tumor’s development. Funding and advocating for innovative scientific collaborations like the Brain Tumor Project has been central to our mission for over 30 years.”

The Brain Tumor Project’s goal is to help the biomedical community better understand the brain tumor landscape by generating, aggregating, and sharing genomic, clinical, molecular, and patient-reported data. The project is part of Count Me In, a nonprofit organization stewarded by the Broad Institute of MIT and Harvard, the Biden Cancer Initiative, the Dana-Farber Cancer Institute, and Emerson Collective, a California-based social change organization.

The Brain Tumor Project has been designed and implemented collaboratively with brain tumor patients, advocates, caregivers, loved ones, cancer researchers, and clinicians. Families whose child has been diagnosed with a brain tumor can share their child’s experience by visiting braintumorproject.org/count-me-in and completing a simple online form.

After filling out the initial survey, families in the United States and Canada will be asked to complete an online informed consent form requesting permission to obtain copies of their child’s medical records and a saliva sample. Families may also opt-in to providing a blood sample and/or allowing the project to request a small portion of their child’s stored tumor sample.

Participants’ samples will undergo cutting-edge, comprehensive genomic analyses and the generated sequencing data will be securely stored in a protected database. Any information that would make it easy to identify a participant as an individual will be removed from all genomic and clinical data, and publicly available data will be housed on cbioportal.org, a web-based platform to allow exploration of genomic data, as well as dbGaP and the NCI's Genomic Data Commons (GDC).

“By collecting and freely sharing patients’ experiences and genomic, clinical and molecular data, researchers will be better-equipped to pinpoint and eradicate the weaknesses of each tumor type without impacting patients’ quality of life. That’s why, as the leading childhood brain tumor nonprofit, the Pediatric Brain Tumor Foundation encourages families to say ‘Count me in’ to the Brain Tumor Project,” Davies adds.

PBTF advises families to discuss this study with their child’s medical team by sharing this PDF designed specifically for physicians. More information and answers to frequently asked questions about the Brain Tumor Project can also be found here.

About the Pediatric Brain Tumor Foundation
Every day, 13 children and teens are diagnosed with a brain tumor, the deadliest form of childhood cancer. Every day after, they are in a fight for their life. It is a fight the Pediatric Brain Tumor Foundation is here to help families win. A leader in the brain tumor and childhood cancer communities, PBTF’s mission of Care. Cure. Thrive. reflects its commitment to curing all pediatric brain tumors and transforming how children and their families are cared for. Since 1991, PBTF has provided strategic leadership and funding to accelerate the number of targeted therapies for children battling brain tumors today, while equipping families with the educational resources, financial relief and emotional support they need to navigate their child’s journey. A world without childhood brain tumors is possible when we stand together to effect real, meaningful change. Learn more at www.curethekids.org.