Children’s Tumor Foundation Staff Scientist, Kim Scobie, PhD
“Our vision for this project,” said Bergner, “is that it is a stepping-stone to open the dialogue within the NF2 community about the unmet communication needs of people living with this condition. We welcome feedback and ideas for other aspects of communication that we might explore.” Amanda Bergner can be contacted at abergne1@jhmi.edu.
weaknesses
ify
Basic; not a lot of options
s;
Keyboard layout is alphabetical (not QWERTY layout)
ng to ange
Time-consuming to personalize setting; voice quality poor
to te
No spellcheck or autocomplete
Speech quality could be better; does not store recently typed phrases
ally;
Does not store recently typed phrases
the
on
No way to dictate into a document
The New Data Warehouse • Data is needed to drive research, to understand disease, and to find treatments. • Data leads to publications, to patents, and to funding. • Generating data has become cheaper, faster, and easier. Sequencing the human genome of one individual in the 1980’s cost approximately one billion dollars and took six to eight years. Today, a human genome can be sequenced in a day or two at a cost of roughly $3,000-5,000! Therefore, generating data is not a hurdle anymore. Now the challenge is how to process and integrate data so that one can actually learn about disease and disease progression. A lot of data already exists and much new data is generated with funding from the Children’s Tumor Foundation. In order to make sense of that data, and in order to store the data in a safe, central, and neutral place, the Foundation is investing in the construction of a data warehouse. This data warehouse project will be led by Kim Scobie, the Foundation’s new Staff Scientist. Data warehousing is part of the global shift by successful foundations towards making research findings openly available and free of charge to readers. Making research data more accessible will encourage collaboration, support ongoing innovation, and identify gaps in current data sets. The Children’s Tumor Foundation is joining the movement to make data available with the aim of accelerating the identification of treatments and a cure for NF. Its team of scientists and technology consultants have been evaluating a number of companies that specialize in the aggregation and sharing of data. The Foundation’s goal is to gather, integrate, and contextualize public and CTF-funded data, and it looks forward to using the data warehouse as an effective tool in the ongoing fight against NF.
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