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The NF Data Portal was built by members of the NF Open Science Initiative (NF-OSI), an alliance that was formed to support open science within the neurofibromatosis and schwannomatosis research community. NF-OSI is the result of a collaboration effort between the Children’s Tumor Foundation (CTF) and the Neurofibromatosis Therapeutic Acceleration Program (NTAP) that dates back to 2014. More recent participants include the Gilbert Family Foundation (GFF), the Developmental and Hyperactive Ras Tumor SPORE (DHART-SPORE), and the CDMRP Neurofibromatosis Research Program (NFRP). You can read more about these programs here. The NF-OSI is an open effort focusing on finding NF treatments by sharing data and analysis results with the broader community—an effort aided by the existence of the NF Data Portal.
Funding
The NF Data Portal was built and is maintained thanks to generous support from:
The Children’s Tumor Foundation (CTF-2018-04-002, CTF-2021-04-006)
Neurofibromatosis Therapeutic Acceleration Program
Gilbert Family Foundation
Leona M. & Harry B. Helmsley Charitable Trust (2018PG-HPL007)
Our Data Lifecycle
The studies featured on the NF Data Portal embrace open science principles and operate under a regulated data lifecycle:
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At this point, you know what the NF Data Portal is, and have likely come across the term Synapse - but how do they fit together? Let’s break this down:
Sage Bionetworks | First, there’s Sage Bionetworks - a name you may or may not have come across. While Sage is not a tool you’ll be using, you should know what it is—the company behind all of this! We are a non-profit organization based out of Seattle, Washington. Sage is dedicated to promoting and advancing open science, as well as engaging patients in the research process. Sage acts as the Data Coordinating Center (DCC) for several different portals, including the NF Data Portal. The scientists, developers, and designers that built the tools you’re using are all employed by Sage. You can learn more about Sage Bionetworks and its initiatives here. |
Synapse | In line with advocating for open science, Sage developed a software platform called Synapse. This platform is what allows for collaborative data curation and analysis, computational modelling, and more. It allows users to upload, store, analyze, and track data in a private space, before releasing it to the public-facing NF Data Portal. Think of Synapse as the back-end for all the data to live in. |
NF Data Portal | If Synapse is the back-end for data, the NF Data Portal is the front. It’s essentially the user interface (UI) or entry point for you to view data and other shared content. Data gets uploaded into Synapse, where it is then processed into readable form for you to access in the portal. |
NF Data Standards
Data standards underpin data sharing and make it possible to successfully explore, access, analyze, and reuse data. Data standards involve:
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