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NF diseases are relatively rare, so samples and data generated in this area are precious. This is why open science principles are so valuable—data sharing and collaboration maximizes the value and impact of research. The NF Data Portal exists to support this joint effort.
Our Data Lifecycle
Introduction
The NF Data Portal was created to facilitate the discovery and exploration of NF datasets, analysis tools, resources, and publications. The open access data in the NF Data Portal is generated by studies backed by funding organizations, including Children’s Tumor Foundation (CTF), Neurofibromatosis Therapeutic Acceleration Program (NTAP), and Gilbert Family Foundation (GFF). Some studies are funded in conjunction with one another—such a group of funded projects is called an initiative on the portal. These studies To get familiar with the organizational structure of the NF Data Portal, check out this diagram:
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To learn more about how the NF Data Portal is structured so that you can make the most of your time exploring and using it, see
History
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 Children’s Tumor Foundation (CTF) and the Neurofibromatosis therapeutic acceleration program (NTAP) that dates back to 2014 (you can read more about these programs here). This 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.
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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