Can Cui
Katherine J. Strandburg and Brett M. Frischmann (eds)
- Published in print:
- 2014
- Published Online:
- November 2014
- ISBN:
- 9780199972036
- eISBN:
- 9780199361908
- Item type:
- chapter
- Publisher:
- Oxford University Press
- DOI:
- 10.1093/acprof:oso/9780199972036.003.0006
- Subject:
- Law, Intellectual Property, IT, and Media Law, Environmental and Energy Law
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 ...
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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.Less
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.
Elad Yom-Tov
- Published in print:
- 2016
- Published Online:
- September 2016
- ISBN:
- 9780262034500
- eISBN:
- 9780262334808
- Item type:
- chapter
- Publisher:
- The MIT Press
- DOI:
- 10.7551/mitpress/9780262034500.003.0004
- Subject:
- Society and Culture, Cultural Studies
The internet serves as a unique virtual meeting place for people with rare diseases, providing advice on recovery, but also, astoundingly, on how to remain ill. The latter is especially true for ...
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The internet serves as a unique virtual meeting place for people with rare diseases, providing advice on recovery, but also, astoundingly, on how to remain ill. The latter is especially true for certain mental diseases, of which anorexia nervosa is a primary example. In some of these websites, good-intentioned interventions aimed at helping people recover from their condition are shown to be detrimental. The ability to identify anorexia patients because of their online activity is used to answer an important question of public health, namely, the relationship between the portrayal of celebrities (especially those suspected to be suffering from an eating disorder) by mainstream media and the development of anorexia.Less
The internet serves as a unique virtual meeting place for people with rare diseases, providing advice on recovery, but also, astoundingly, on how to remain ill. The latter is especially true for certain mental diseases, of which anorexia nervosa is a primary example. In some of these websites, good-intentioned interventions aimed at helping people recover from their condition are shown to be detrimental. The ability to identify anorexia patients because of their online activity is used to answer an important question of public health, namely, the relationship between the portrayal of celebrities (especially those suspected to be suffering from an eating disorder) by mainstream media and the development of anorexia.
