Science is not made in isolation, and now all the products of research, including data, are considered important pieces of the puzzle we are trying to put together. Not only what works, but also what doesn’t work – the null hypothesis – is critical to advancing our knowledge of NF and potential treatments. With this philosophy propelling our approach, in 2014 the Children’s Tumor Foundation initiated an open data and data sharing movement. Together with Neurofibromatosis Therapeutic Acceleration Program (NTAP) and Sage Bionetworks, and later joined by the Gilbert Family Foundation (GFF), we built the NF Data Portal.
And in early October, the Neurofibromatosis Research Program (NFRP), part of the CDMRP (Congressionally Directed Medical Research Programs) funding that CTF successfully advocates for each year, joined CTF, NTAP, GFF, and Sage in supporting the NF Open Science Initiative (NF-OSI) to foster data-sharing using an online data portal specific to NF-related data.
Thanks to the data portal and NF-OSI, we are maximizing the outputs that these projects will generate beyond the conclusion of their initial line of research. The data produced by these grants will be integrated with other data and will allow for secondary analyses that will help answer other, often more complex, questions. Data hackathons, like the Hack for NF that CTF is currently running will also benefit from data collected by the NF-OSI.
Click here to read more about the NF Open Science Initiative and the NFRP’s ongoing projects that will contribute valuable data.
