The Children's Tumor Foundation has partnered with Sage Bionetworks to create an NF Data Resource Hub available for researchers. The hub is hosted on the Synapse platform created by Sage, and contains molecular and clinical data coming from the many projects that the Foundation is managing. In particular, the Synodos consortia projects will use the platform to execute their data analysis and integration, releasing their datasets during the length of the project in a timely fashion.
The Synodos projects work with a 12-month embargo on data release, allowing their participants to share results in real-time within an exclusive space, and then releasing them progressively after the confidentiality period. Other projects that the Foundation is managing and sponsoring will use this platform as a resource for making data available for the research community fruition.
The NF data consists of screening datasets, genomic characterization of model systems, multiplexed analysis, collection of publicly available datasets, etc.
Synapse operates under a complete governance process that includes well-documented Terms and Conditions of Use, guidelines and operating procedures, and privacy-enhancing technologies, as well as the right of audit and external reviews. In terms of Data Use Procedures, the Synapse platform supports data contribution and use through a tiered system that distinguishes open or controlled data use based on the nature of the data and the conditions delineated by the data contributor. NF data stored in Synapse is de-identified according to HIPAA standards. Synapse users are asked to register before using controlled content on Synapse. In some cases they must also show proof of approval of their data analysis plan from an ethics committee or institutional review board prior to accessing the data through Synapse.
NF1: Dermal Neurofibromas
In partnership with Mt. Sinai and Hudson Alpha, samples were collected and analyzed samples from:
Assays: iTRAQ Proteomics, RNA-Seq, Whole Genome Seq, Copy Number
NF2: Synodos Consortium
For phase 1 data release, the consortium has made public the drug screening data for:
Assays: Drug Screening