The NF Data Portal and Our Data Lifecycle
The Neurofibromatosis Open Science Initiative (NF-OSI) was built to promote a community of data sharing. Because neurofibromatosis (NF) diseases (neurofibromatosis type 1, type 2, and schwannomatosis) are rare and samples generated in this area are precious, data sharing and collaboration maximizes the value and impact of your research. The NF Data Portal supports this endeavor and works to provide solutions to the data challenges.
If you are new to the NF Data Portal, it may be useful to understand the portal structure and general data flow, or lifecycle. The portal organizes information as follows:
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Funding organizations — including Children’s Tumor Foundation (CTF), Neurofibromatosis Therapeutic Acceleration Program (NTAP), and Gilbert Family Foundation (GFF) — support researchers who design experimental studies. These studies are sometimes part of a group of funded projects, which are called an “initiative” on the portal. Funded studies produce data files, metadata (also called annotations), publications, and biological tools like cell lines, mouse models, and plasmids. Study products, such as multiple data files, may be bundled into a dataset, or explored and analyzed with computational tools developed by the community. For an in-depth review of the NF Data Portal’s community engagement and structure, please see our article in Scientific Data1.
The NF data portal research lifecycle operates using 5 distinct phases, as follows:
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Portal users can engage with one, a few, or all of these stages, and each stage surfaces on the portal in different ways.
During the data generation phase, data are uploaded to the data storage platform, Synapse. During this phase, the data are typically not available for download on the portal, but some information is exposed, such as study title, study description, and metadata.
Data curation mostly occurs behind the scenes of the portal on our data storage platform, Synapse, but this stage enables data discovery, powering search and exploration on the portal.
Data analysis surfaces on the portal through biological and computational tools and is boosted through information available on the portal such as metadata and provenance.
Data interpretation is enabled through various Synapse features, including wikis and discussion forums, but can also be explored on the portal via published data, associated publications, and tools.
Data dissemination includes the NF Data Portal, journal publications, and other means of data distribution. Our NF Portal News site announces important data releases.
Related Documentation
References
Allaway, R.J., La Rosa, S., Verma, S. et al. Engaging a community to enable disease-centric data sharing with the NF Data Portal. Sci Data 6, 319 (2019). https://doi.org/10.1038/s41597-019-0317-x
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