NCI is busy building the foundation for a plan to develop an innovative childhood cancer initiative with an aggressive focus on data sharing. The initiative aims to accelerate progress for children and adolescents and young adults (AIA) with cancer and their families. It will begin in FY2020 with the proposed increase in NCI’s $ 50 million budget and continuing for 10 years as proposed by the White House.
In recent years, we have seen a lot of progress in the treatment of children’s cancer. In the 1970s, more than 50% of children with cancer were expected to live for 5 years or more. But advances in treatment have pushed that figure to over 80% today.
However, higher survival rates are not seen in all pediatric cancers.
Progress is limited against certain types. Furthermore, we still have very little insight into why some children do very well on treatment and then later suffer a grief.
For children who survive, the long-term and delayed effects of cancer and its treatment can severely reduce their quality of life. And, despite improvements in treatment, the specific causes of most pediatric cancer are largely unknown.
Even a child dying of cancer is a child. Clearly, there is much more that we must do to overcome the challenges that impede more rapid progress.
Stay up to date on CCDI To
learn more about this initiative, visit the CCDI webpage, providing details about upcoming events and a poster summary for the July 29–31 seminar.
Given that childhood and AIA cancers are relatively uncommon, with approximately 1% of cancers diagnosed annually in the United States, we have a limited amount of clinical and genomic data available for study. In addition, we currently have efficient methods to collect, share, and integrate data from individual centers that care for children and children with cancer in AY.
This limits the ability for researchers to collaborate and produce complex analyzes, hindering our understanding of the pathogenesis of pediatric cancer and the development of more effective and safe treatments.
Learning from every young person with cancer
CCDI will help maximize the usefulness of data collected from childhood and AYA cancer patients, from institutions around the country and the world. Through improved data federation, CCDI will combine these data with an infrastructure to facilitate sharing. By doing so, we can help researchers and oncology teams learn from every young person’s experience with cancer and make better informed decisions for their pediatric and AIY patients.
CCDI will be the first of its kind in terms of quality, size and scope of data accessibility, making it a highly valuable asset for young patients with cancer, their families, physicians and researchers. The initiative has the potential to chart a path that can change how cancer is prevented, diagnosed and treated in youth.
These provisions encourage NCI to support and continue childhood and AYA.
To increase the collection of samples for survival research, and childhood and AYA cancer research. NCI anticipates that CCDI will complement this work: data from samples collected through STAR Act efforts will contribute to CCDI, and CCDI data resources will also enable future leftover research.
Shaping the direction of CCDI
To shape the scientific direction of CCDI, NCI is hosting a planning seminar on July 29, 31 in Washington, DC. The symposium addresses academic, government, industry, and advocacy about the needs of scientific and clinical research data, opportunities for developing an associated data infrastructure, ways to provide meaningful datasets for clinical care and related research progress, and policies. Gather leaders and stakeholders from communities. Collecting and sharing data. We encourage members of the public to watch the seminar via videocost.