The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR): An Emerging Knowledge Commons
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Description
This chapter reports our study of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), which is part of the NIH Rare Diseases Clinical Research Network (RDCRN). CEGIR addresses eosinophilic gastrointestinal diseases (EGIDs), the most common and well studied of which is eosinophilic esophagitis (EoE). Strandburg, Frischmann, and Cui (2014) previously studied the Urea Cycle Disorder Consortium (UCDC), while the North American Mitochondrial Disease Consortium (NAMDC) is the subject of the previous chapter in this book. While there are many similarities between the goals of these consortia and their general structures, there are also significant differences in the underlying challenges they face and the approaches they take to those challenges. These studies also provide snapshots at different stages of consortium development: The UCDC, funded in 2003, was among the first RDCRN consortia and was well into data collection at the time of our study. NAMDC began operations in 2011 and is engaged in constructing its pool of research subjects, patient data, and biospecimens. CEGIR was funded in 2014 and had been in operation for less than a year at the time of this study.
Source Publication
Governing Medical Knowledge Commons
Source Editors/Authors
Katherine J. Strandburg, Brett M. Frischmann, Michael J. Madison
Publication Date
2017
Recommended Citation
Strandburg, Katherine J. and Bechtold, Stefan, "The Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR): An Emerging Knowledge Commons" (2017). Faculty Chapters. 1669.
https://gretchen.law.nyu.edu/fac-chapt/1669
