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This site exists to help orient you to the portal and use it with ease to make the most of your experience.
What’s here for you?
Read about the background of the portal and how it fits into the bigger data-sharing picture
Get familiar with the basic structure of the portal
Refer to the glossary if you come across a term you’re unsure of
Understand how to successfully contribute data to the portal
Learn how to navigate the portal to explore and access the data you’re looking for
What do you need to get started?
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Thanks to the open science principles that the portal is built on, anyone can browse its content! Nothing needed to explore—just You don’t need to setup anything to simply explore the portal—just go right ahead (and remember to use this site for help).
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If you want to download data, you will need to register for a Synapse account and, in doing so, agree to the Synapse Terms and Conditions of Use (learn about Synapse here and here).
Some data on the portal is considered Controlled Use controlled access and requires you to request access by reading and electronically agreeing to data-specific terms. Learn how to do so
For studies that contain controlled access data, you can find information on requesting access within the Study Details page of that study—such as seen here. You can also find general information on requesting access for any study in the Synapse documentation, here.
Using data
If you plan to use any data downloaded from the portal in any publications, whether the data is open use or controlled useaccess, we ask that you include an acknowledgement of use. To cite the NF Data Portal in a publication, please cite this articleYou can find specific acknowledgement statements within the Study Details page of any study—such as seen here.
Contributing data
Do you have data, analyses, or tools that can benefit NF research? You may be eligible to become a community contributor and have your resources hosted in the NF Data Portal. There are several steps that you must complete in order to set up your data sharing, and additional steps to complete if your project has been funded by one of our partners. See this page for an overview of what’s involved in sharing data.
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