Before learning how to successfully navigate the site and access your data of interest, you should become familiar with some of the common terms used to categorize data and how they fit with one another.
The organizational structure of the NF Data Portal is as follows:
These terms can have slightly different definitions depending on context (for example, other portals in the Sage network might define them differently). Here’s how these terms are defined in the NF Data Portal:
Funding Organization: These are organizations that fund our studies, including Children’s Tumor Foundation (CTF), Neurofibromatosis Therapeutic Acceleration Program (NTAP), and Gilbert Family Foundation (GFF).
Initiative: These are groups of related grant-funded projects (see “Studies” below); typically, an initiative is the same as a grant mechanism (for example, the Children’s Tumor Foundation Young Investigator Award).
Hackathon: This is the newest category to the portal (May 2021) which represents the output of events like the 2021 Hack for Rare, in which community members use data, software, and other resources to develop mini-research projects over the course of a weekend or a few weeks.
Project: This is a mini-research project not associated with a grant, but instead is a project that describes the result of a hackathon or other collaborative science event.
Study: A study is a funded research project that bundles multiple pieces of project information together, including a study title, summary, lead investigator, access requirements, acknowledgement statements, data files, datasets, metadata files, tools, publications, and related studies. Not all of these components will necessarily be present, particularly if the study is currently active/in-progress.
Data Files: With thousands of files on the NF Data Portal, files can be varied. They may be individual data files, such as raw sequencing runs (e.g. FASTQ files), or they may be report files, which are often required by funders to track data generation progress.
Datasets: Datasets bundle multiple similar data files together into one large bulk file that can be downloaded at once. NF datasets range in size from hundreds of files, to just a few. Sometimes, datasets have also been processed or harmonized to improve their usefulness.
Publications: Publications are collected by the NF Data Portal data curation team, and represent publications generated from funded studies generating data on the portal. If you have produced a publication that created or uses data available on the NF Data Portal, and do not see it on the portal, please let us know at nf-osi@sagebionetworks.org.
Biological and Computational Tools: These tools are built to explore or analyze neurofibromatosis data. Some tools run on datasets available on the NF Data Portal; others use larger databases such as DrugBank. To submit an NF tool, email nf-osi@sagebionetworks.org.
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