publication date: Apr. 28, 2017
Tom Curran: Contract between NantHealth and U of Utah “seems a bit expensive”
Chief Scientific Officer and Executive Director
Children’s Mercy Children’s Research Institute in Kansas City
Starting in 2008, I worked closely with Peter Phillips to establish the Children’s Brain Tumor Tissue Consortium designed to generate a biorepository of rare biospecimens, with associated clinical information and genomic data, that could be shared with the research community.
The first organizations involved were Seattle Children’s, Chicago Lurie, Children’s Hospital of Pittsburgh and Children’s Hospital of Philadelphia, where we both worked at the time. It took a significant amount of effort, as you might imagine, given the concerns about HIPAA, intellectual property, ownership of materials and access to data.
At one point, one institution said their legal folks would not allow them to give up ownership of patient biospecimens, so we thought it might fall apart. Then one of our colleagues in Pittsburgh came up with a brilliant suggestion–she said how about if we give the specimens to the biorepository on a permanent loan basis.
The lawyers were completely fine with this so we went ahead. Once the initial group was established, it proved easier to sign up new participants. We were funded by the Children’s Brain Tumor Foundation to build the infrastructure and by several other foundations to use the biospecimens to generate genomic data.
So, of … Continue reading Tom Curran: Contract between NantHealth and U of Utah “seems a bit expensive”
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