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in Knowledge Commons Governance (B. Frischmann, M. Madison, and K. Strandburg, eds.) (OUP 2014)


Information sharing, collaboration, and community building among researchers, doctors, and patients are critical to rare disease research. It is very difficult to do clinical research on rare diseases; rareness means small numbers of patients, who usually are dispersed among geographically scattered medical centers. This chapter reports on a case study of the Rare Disease Clinical Research Network (RDCRN)’s Urea Cycle Disorders Consortium (UCDC) that employed the knowledge commons framework described in Chapter 1 of this volume. This case study is a step toward understanding whether and in what ways the RDCRN contributes to progress in combating rare diseases. Government funding for research is limited, and it is important to try to understand how various ways of structuring that funding influence the outcomes. Observations from close study of the UCDC generate hypotheses about the RDCRN approach that can be tested in comparative studies of other consortia.

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Knowledge commons, IAD framework, Rare Disease Clinical Research Network, Urea Cycle Disorders Consortium, research consortia