Getting Started

Welcome to the NF Data Portal docs site!

This site exists to help orient you to the portal and use it with ease.

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?

So, before you dive in, here’s a breakdown of what you need to get started using the portal:

Exploring data

Thanks to the open science principles that the portal is built on, anyone can browse its content! You don’t need to setup anything to simply explore the portal—just go right ahead (and remember to use this site for help).

Downloading data

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 access and requires you to request access by reading and electronically agreeing to data-specific terms.

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 or controlled access, we ask that you include an acknowledgement of use. You 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.