Data Sharing

Standardize Sharing


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. This is essential particularly for rare cancers where data is in disparate institutions.

Some institutions will not share tumor/genomic data even with patient. A standard NIH form would be helpful at a minimum.

Advocacy organizations can be helpful in activating a disease community to share data - in fact we have been doing this already. Patient families are very willing to help inform research.

We have also developed a guide for families and physicians to know where to send bio samples based on patient goal (inform treatment, research or self on drivers).


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Idea No. 942