In 2018, The Children’s Tumor Foundation, together with the Neurofibromatosis Therapeutic Acceleration Program (NTAP) and Sage Bionetworks, launched the NF Data Portal, which is now available for researchers. The portal 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 and has managed in recent years. In particular, CTF’s Synodos consortia projects used 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 worked 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 to the research community fruition.
By late 2018, over 55 very diverse neurofibromatosis and schwannomatosis studies were available to explore. In addition to data, researchers generated tools, publications, and other types of research that could be linked back to the original studies.