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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 and use the portal to explore and access dataDiscover how to contribute data, if that’s what you’re here the data you’re looking for
What do you need to get started?
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Exploring data
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 and requires an additional submission of a Data Use Certificate (DUC). This can take some time so make sure to go through this step as soon as possible.Find more detailed information on data access 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 use or controlled useaccess, we ask that you must include an official acknowledgement of the data contributors. Find pre-written acknowledgement statements 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 may can benefit Alzheimer’s disease NF research? You may be eligible to become a community contributor and have your resources hosted in the AD Knowledge NF Data Portal. You must apply, and contributions will be evaluated based on relevance to Alzheimer’s disease, complementarity to existing data, and unmet needs.To learn more about data contributions and whether you might be eligible, visit the portal’s Contribute pageThere 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.