Data Collection


The initiative aims to make data work better for users. We need to collect data on childhood cancer that is useful for a wide variety of users, including clinicians, researchers and patients and their families.


Answer one or more of the following questions in your response:

  • What would we need to do to collect the most informative datasets possible?
    • What data types do we need to consider?
    • What are the minimal molecular and clinical data elements needed for a broadly used dataset?
    • What tissue sources should be considered?
(@jaguillot)

Data Collection

Overall Success Metrics Dashboard

HOW DO WE MEASURE SUCCESS? It seems that we are currently lacking centralized, accurate, high-level progress metrics in childhood cancer. How do we know, year over year, if our countless programs/projects are actually moving the needle? Unless I'm missing something, I believe we need a centralized, easy to read, childhood cancer DASHBOARD, that counts EVERY child diagnosed, and includes very basic but highly accurate... more »

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