Scientific Data, a journal from Nature Research, just released a peer-reviewed article co-authored by the Children’s Tumor Foundation, Sage Bionetworks, and the Neurofibromatosis Therapeutic Acceleration Program (NTAP) about the significant challenge facing rare disease communities when it comes to finding a sufficient quantity and variety of data to develop and test disease-specific hypotheses. In order to advance the science and the treatments, data sharing (knowing what works and doesn’t work) and integrating data into knowledge is key to efficiently translating discoveries into better treatments. Every day, new data is generated that could help patients. If data remains unshared, the time to turn discoveries into treatments is long and cumbersome.
In this article, an approach to data sharing is detailed in which all stakeholders (funders, researchers, clinicians) from the neurofibromatosis (NF) research community have come together to develop one centralized disease-focused data portal with the goal of accelerating the translation from discovery to clinical benefit: the NF Data Portal.
The NF Data Portal is leading to new collaborations, hackathons, new researchers that are interested in NF and especially it is building a data community that will accelerate the development of new treatments faster. It is a prime example of an UNtraditional approach that CTF is known for! To read the full article in Scientific Data, click here. (DOI 10.1038/s41597-019-
