The National Cancer Institute (NCI) is launching a first-of-its-kind, public-private partnership to bring clinical and patient navigation support to families facing childhood cancer. The White House announced the Childhood Cancer – Data Integration for Research, Education, Care, and Clinical Trials (CC-DIRECT) initiative on the one-year anniversary of the reignited Cancer Moonshot.
CC-DIRECT is designed to improve access to care, participation in research and clinical trials, and data sharing for children, adolescents, and young adults throughout their cancer journey. CC-DIRECT also aims to establish a portable, shareable, standardized cancer health record for pediatric patients.
“CC-DIRECT is a step in the right direction by the reignited Cancer Moonshot toward addressing the unique needs of children with cancer. Our hope is that this initiative makes it easier for families to access clinical trials for their child, accelerates researchers’ development of better treatments, and signifies a sustained and greater focus by policymakers on pediatric cancer patients,” says Courtney Davies, President and CEO of the Pediatric Brain Tumor Foundation.
To truly end cancer as we know it, policymakers need to understand the challenges facing the childhood cancer community and commit to addressing them. A report published by the Central Brain Tumor Registry of the United States during Childhood Cancer Awareness Month revealed that more children under the age of 19 are diagnosed and dying from brain cancer than ever before, while adult brain cancer patients are experiencing a decline in the incidence of diagnosis and mortality rates.
The Pediatric Brain Tumor Foundation is committed to making kids with brain cancer a national health priority, working with patients, survivors, parents, and other patient advocates to educate legislators and government agencies about the urgent need for increased resources. Sign up to be an advocate with the Pediatric Brain Tumor Foundation and make your voice heard. When you join our advocacy community, you’ll receive the latest news on legislation affecting the pediatric brain tumor community and opportunities to meet with policymakers and legislators.
To learn more about CC-DIRECT and the other Cancer Moonshot initiatives announced last week, read the White House’s Fact Sheet here.
The Pediatric Brain Tumor Foundation today announced the appointment of Ursula Burns and Jordan Wertlieb as inaugural members of the organization’s new Advisory Board. Burns and Wertlieb offer their exceptional business acumen and experience to PBTF, the largest patient advocacy funder of pediatric brain tumor research.
