Data Sharing


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?
(@farahank)

Data Sharing

Build a childhood cancer imaging repository in the Cancer Imaging Archive (TCIA) to contain standard of care imaging data

The Cancer Imaging Archive (TCIA) is an NCI-supported data repository for hosting de-identified publicly accessible cancer imaging data and clinical information from studies and trials. Over the past 10 years TCIA has become a valuable public resource to the broader imaging research community. Although TCIA currently holds over 100 collections derived from major research initiative, it has limited existing childhood... more »

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(@farahank)

Data Sharing

Build a repository in the Cancer Imaging Archive (TCIA) to contain data from the Children's Oncology Group trials.

The Cancer Imaging Archive (TCIA) is an NCI-supported data repository for hosting de-identified publicly accessible cancer imaging data and clinical information from studies and trials. Over the past 10 years TCIA has become a valuable public resource to the broader imaging research community. Although TCIA currently holds over 100 collections derived from major research initiative, it has limited existing childhood... more »

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(@ljmillet)

Data Sharing

Patient data linked with treatment protocols

As a scientist and patient's parent, I believe strongly in data sharing to help others, IF the data is de-identified and privacy is secure. Comments by a CCDI speaker, that suggest it is unethical for patients and parents to think that they should have some right to privacy and a choice to or not to share data, are extremely harmful to science and medicine, and it is a deeply troubling movement. On a related counter-point,... more »

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(@renci.deloitte)

Data Sharing

Data Sharing Policies

To maintain participant-centric research, studies should always provide participants, guardians, and their respective point-of-care physicians with all relevant data, research findings, and recommendations. Funding institutions should move towards operationalizing data sharing by implementing robust policies. These policies should be supplemented by a roadmap of priorities and investments that incentivize researchers... more »

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Data Sharing

Facilitating interoperability across various data repositories

Facilitating interoperability across various data repositories as well as novel and harmonized data analytic tools that can be used across different systems: Many hematologic diseases, including those that impact the pediatric population are categorized as rare diseases. The rare, yet deleterious nature of these diseases (e.g., chronic myelomonocytic leukemia) make it challenging to build a critical mass of data, that... more »

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(@greenescientist)

Data Sharing

Resource & Data Sharing Plans Should Be Public In NIH RePORTER

Proposals submitted to the NIH often require a Resource Sharing Plan document, and those proposing more than $500k in annual direct costs often require a Data Sharing Plan. These documents are not made public, making it onerous for investigators to understand what commitments have been made to the NIH as a condition of funding. For a use case, imagine a scenario where the reader of a manuscript identifies a described... more »

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(@daronsbraintumor)

Data Sharing

Biospecimen and Dataset Notice Policy

Currently the NCI's specimen resource locator website seems to be underused as a means for helping researchers identify which labs and institutions have certain biospecimen collections. The NCI could require that all biospecimen and more expansively, cancer data collections that were funded by public funding through the NIH be reported to this website as a means of helping all researchers know where the data is and who... 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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