Cancer Data Science Pulse

It Takes the Community To Enhance Childhood Cancer Data Sharing

Decorative image titled Childhood Cancer Data Initiative

You’ve probably heard the expression “it takes a village to raise a child…” and that same maxim can be applied to enhancing data sharing for childhood cancer. Just as numerous role models can shape, foster, and guide a child into adulthood, so can the various stakeholders within the broader cancer research community play a pivotal role in the success of data sharing efforts. Data sharing isn’t a one-way process but rather a nexus that includes researchers at the bench and in the clinical setting, the patients and their families who consent to share their data with the research community, and the advocates who champion on behalf of the research and participant communities. 

Now, in the age of big data, it’s clear that data science, informatics, and information technology play a critical role in making data sharing plausible. The tools, infrastructure, and approach to data management allow for the extraction of meaningful insight to drive discovery from a wide variety of data types and studies. I encourage you to share your ideas, experience, and expertise with the NCI Childhood Cancer Data Initiative (CCDI) as we work to guide data sharing in pursuit of progress against childhood cancer.   

To this end, we at NCI are soliciting ideas and feedback from across the cancer community with the following questions in mind:

  1. Research Questions
    What research questions can be addressed through enhanced sharing of childhood cancer data? What data types or sources would be needed to answer those questions?
  2. Analytical Tools
    What existing tools can be adapted to make it easier to develop, maintain, and/or use childhood cancer data in a common data infrastructure? What new tools need to be developed? 
  3. Data Collection
    What would we need to do to collect the most informative data sets possible? Are there data types or tissue sources that should be considered? What are the minimal molecular and clinical data elements needed for a broadly used data set?
  4. Data Infrastructure
    What gaps are there in existing childhood cancer data repositories? What are the opportunities for linking existing and new data repositories?
  5. Data Sharing
    What challenges are there to broadly sharing childhood cancer data, and how can we improve upon them? What are ways data is successfully being shared now? 
  6. Engaging the Communities
    What are the best ways to engage researchers and participant communities? What is the most important part of this initiative for you?

Your input is critical as NCI seeks to make the most of the federal investment to collect, analyze, and share data to address the burden of cancer in children, adolescents, and young adults.

We encourage you to share your ideas to enhance data sharing for childhood cancer and join the CCDI symposium virtually, July 29 – 31.

Jaime M. Guidry Auvil, Ph.D.
Director, Office of Data Sharing, Center for Biomedical Informatics and Information Technology
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