The Rare Diseases Clinical Research Network and the Urea Cycle Disorders Consortium as Nested Knowledge Commons

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

NYU Law and Economics Research Paper No. 14-43

55 Pages Posted: 17 Dec 2014

See all articles by Katherine J. Strandburg

Katherine J. Strandburg

New York University School of Law

Brett M. Frischmann

Villanova University - School of Law

Can Cui

The Chinese University of Hong Kong (CUHK) - Faculty of Law

Date Written: December 15, 2014

Abstract

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.

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

Suggested Citation

Strandburg, Katherine J. and Frischmann, Brett M. and Cui, Can, The Rare Diseases Clinical Research Network and the Urea Cycle Disorders Consortium as Nested Knowledge Commons (December 15, 2014). in Knowledge Commons Governance (B. Frischmann, M. Madison, and K. Strandburg, eds.) (OUP 2014) ; NYU Law and Economics Research Paper No. 14-43. Available at SSRN: https://ssrn.com/abstract=2538609

Katherine J. Strandburg (Contact Author)

New York University School of Law ( email )

40 Washington Square South
New York, NY 10012-1099
United States

Brett M. Frischmann

Villanova University - School of Law ( email )

299 N. Spring Mill Road
Villanova, PA 19085
United States

Can Cui

The Chinese University of Hong Kong (CUHK) - Faculty of Law ( email )

6/F, Lee Shau Kee Building
Shatin
New Territories
Hong Kong

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