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How to Share Data

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If you would like to submit data to the NF Data Portal, steps to do so are outlined below. Please note that if your project has been funded by one of our partners, we will be in touch with you, and you may have additional obligations to fulfill beyond the steps below, such as attending onboarding.

Data Sharing Step-by-Step

  1. Become a certified Synapse user. This involves:

  2. Complete a data sharing plan (DSP). (Note: Some DSPs are tailored to specific funders, including CTF, GFF - GTI and VRINTAP, and DHART-SPORE.)

  3. Complete the data project intake form, which will collect information needed to set up a Synapse project and list it as a study on NF Data Portal, including the project title and abstract, lead investigators, who should have access to the project, and other details. (Note: you can attach your completed DSP from step #2 to this form, if you wish.)

  4. If your data are already generated and ready for public release, ensure that:

    • You have the appropriate permission and authority to do so (such as Institutional Review Board approval, informed consent, etc.). If you need to place conditions for use (access restrictions) on your data, please let us know (and be sure to detail them in your data sharing plan during step #2).

    • Your data are annotated with metadata. (Note: we may ask you to validate your metadata, and will provide information about this process at the time.)

  5. Once we receive your information, we’ll review your submission, and (if approved) work with you to deposit your data in Synapse. Once all data is deposited and the embargo period ends, we’ll share your data on the NF Data Portal.

Data Sharing Frequently Asked Questions (FAQs)

Why should I be certified on Synapse, and what does that involve?

If you’ll be uploading data to your project, you must become certified on Synapse before doing so. Certification requires the completion of a short quiz, which ensures you have awareness of privacy and security issues associated with using a platform that stores human subjects research data.

Why do I have to submit a data sharing plan (DSP)?

A DSP helps the NF Data Portal’s data curation team prepare for your data intake, so they can better assist you with your project. DSPs notify us of upcoming deadlines and whether data deposits will include sensitive data requiring access controls. They also indicate whether we need to prepare for new data types by extending our metadata dictionary to accomodate new attributes and terms.

What if I’ve already created a Synapse project with NF data I’d like to share on the portal?

Please get in touch with us, and in addition to following the applicable steps above, send us the synID of your project.

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