The initiative aims to maximize every opportunity to improve treatments and outcomes for children with cancer. Data sharing can break down barriers between institutions, including those in the public and private sectors to increase knowledge sharing and to help patients.
Answer one or more of the following questions in your response:
- What challenges are there to broadly sharing childhood cancer data?
- How are data successfully being shared now? How can we improve upon it?
To further encourage sharing, the resource sharing plans submitted to the NIH should be reviewed for overall impact. NIH should also consider scoring them individually.
For a use case, imagine a scenario where the reader of a manuscript identifies a described... more »
engage patients/parents/local foundations to insist that hospitals are participating in data sharing initiatives
Work with US News & World Reports to include a measure of data sharing in its rankings of hospitals
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 »