Data Collection


- Create a central performance dashboard/scorecard for childhood cancer (across all patients) that clearly/easily shows if we are making improvements in decreasing new diagnoses, relapse rates, significant late effects, survival, etc. We are dumping millions of dollars and man-hours into improving outcomes...are we really moving the needle?

- Create a centralized patient data registry that includes a myriad of useful data -- including some self-reporting and submitted by parents (parental DNA, exposure information, side/late effect, locations where patient lived, etc.) to both support research and feed performance scorecard. Registry would also include patient omics data, therapies received, significant responses/events, etc.

- Sequencing every child to enable, personalized medicine, turn over every stone for every child (immediate win), and provide valuable data to ongoing clinical trials (who responded vs. not, and why?)

- Engage outside assistance/support (outside of academia) to help define and manage project scope and implementation. Engage tech experts/visionaries outside of academia to assist with this project. After attending the DC meeting, I worry -- as an advocate -- that folks are lining up and competing for grant $$$. We must be laser-focused on the business problems we're trying to solve, and the answers we're after (like "identifying new therapeutic targets"), and measuring whether or not we're getting results. My biggest fear is biting off more than can be chewed and getting nothing done. Bring in tech experts to assist with program success metrics, scope definition, implementation, launches, and cultural change management/training/communications. I see huge risk with this effort, and it makes me worried.

- Spend some time with the Leukemia & Lymphoma Soc. to understand what they're doing -- they're consolidating omics/clinical data and building a ped-leukemia Data Commons, rolling out a Master "match" trial, and developing targets. Don't duplicate?


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Idea No. 992