About the NF Data Portal
The NF Data Portal is a public data repository that stores and shares data generated by multiple collaborative research programs focused on neurofibromatosis (NF) diseases (neurofibromatosis type 1, type 2, and schwannomatosis).
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Sage Bionetworks | First, there’s Sage Bionetworks - a name you may or may not have come across. While Sage is not a tool you’ll be using, you should know what it is—the company behind all of this! We are a non-profit organization based out of Seattle, Washington. Sage is dedicated to promoting and advancing open science, as well as engaging patients in the research process. Sage acts as the Data Coordinating Center (DCC) for several different portals, including the NF Data Portal. The scientists, developers, and designers that built the tools you’re using are all employed by Sage. You can learn more about Sage Bionetworks and its initiatives here. |
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Synapse | In line with advocating for open science, Sage developed a software platform called Synapse. This platform is what allows fo collaborative data curation and analysis, computational modelling, and more. It allows users to upload, store, analyze, and tack your data in a private space, before releasing it to the public-facing NF Data Portal. Think if Synapse as the back-end for all the data to live in. |
NF Data Portal | If Synapse is the back-end for data, the NF Data Portal is the front. It’s essentially the user interface or entry point for you to view data and other shared content. Data gets uploaded into Synapse, where it is then processed into readable form for you to access in the portal. |
About data sharing and open science
Why share data?
Data sharing is central to open science. When you share your data, you show your support for the future of science — for its openness, its reproducibility, and its longevity. Responsible and open data sharing allows you to demonstrate the rigor and reliability of your work to others, and by doing so, you invite them to review, reproduce, and reuse your materials, potentially advancing new discoveries. For biomedical data, data sharing can lead to new treatments, therapies, and even cures, improving patient outcomes. Data sharing also contributes to the public good: it can build trust in science, and increase access to scientific knowledge.
Beyond philosophical reasons, data sharing is also required by many funding organizations, including the U.S. National Institutes of Health, and many other governing bodies, foundations, and journal publications.
What is data sharing?
What exactly is data sharing? In general, data sharing means making data available to others in a responsible way. This can include the following additional steps: providing information about the data such as abstracts, code, and protocols; ensuring access controls are in place for sensitive data; embargoing data for a specified period; de-identifying data; and, adding information about the data (called metadata or annotations) to enable data discovery and querying.
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