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?

Data Collection

Trial Preparation and Recovery App

As patients and their families are navigating the landscape of clinical trials, a consistent mechanism for guidance leading up to trials may be more likely to encourage them to provide updates than one that is only introduced afterwards. In order to help navigate the pre- and post-trial process, provide patients and their families with a HIPAA-compliant app to: Provide guidance for pre-trial procedures, and what to expect... more »


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