Childhood Cancer Data Initiative Ideas


The Childhood Cancer Data Initiative needs to hear from you – patients, parents, researchers, clinicians, advocates, data scientists, engineers, and anyone with a bold idea to advance progress against childhood cancer by enhancing data sharing. The ideas will help the National Cancer Institute develop recommendations on how 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.

The submission period is from June 24th to August 9th.

(@sfshih)

Data Collection

Multi-level data and longitudinal data collection: identifying the root causes for child cancer

From the prevention perspective, we should collect both family-level and also environmental-level data to help us identify the determinants of child cancers. On the family level, I would suggest that we collect the data from at least three years before the mother's pregnancy to the time of her child being diagnosed as cancers. Environmental-level includes the family social environment for both pregnant women and children ...more »

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(@erin.barthel)

Data Collection

Prospective data collection of late effects

I would love to see a way to prospectively collect data on late effects. We have so many new drugs coming out and it would be great to initiate this now so we can start collecting late effect data. So much of our knowledge comes from retrospective research collections. This database could be great way to more accurately learn when these late effects develop and what are patients are at risk for with new drugs.

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(@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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(@anngraham)

Data Sharing

Standardize Sharing

Challenges: There needs to be standardization of data reporting and sharing across institutions. Patients need their data accessible and available to share at will. One portal available by all researchers - such as cBio - where individuals could ensure that their redacted data was uploaded into Data needs to live in treating institution as well as made available for all researchers with an interest in a given area. ...more »

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(@anngraham)

Engagement

Ask - Activate - Update

To collect data of any kind from the pediatric cancer community is as easy as asking for it. This community is anxious for innovation toward kinder treatments, and they are ready to help. The next step is to make it easy to do. Engage nonprofit organizations who share research, are engaged with the wider community, are trusted and can activate their members to participate. Commit to updating participants on the impact ...more »

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