Permanent URL to this publication: http://dx.doi.org/10.5167/uzh-38646
Seminara, J; Tuchman, M; Krivitzky, L; Krischer, J; Lee, H S; Lemons, C; Baumgartner, M R; Cederbaum, S; Diaz, G A; Feigenbaum, A; Gallagher, R C; Harding, O; Kerr, D S; Lanpher, B; Lee, B; Lichter-Konecki, U; McCandless, E; Merritt, J L; Oster-Granite, M L; Seashore, M R; Stricker, T; Summar, M; Waisbren, S; Yudkoff, M; Batshaw, M L (2010). Establishing a consortium for the study of rare diseases: The Urea Cycle Disorders Consortium. Molecular Genetics and Metabolism, 100(Sup 1):S97-S105.
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Abstract
The Urea Cycle Disorders Consortium (UCDC) was created as part of a larger network established by the National Institutes of Health to study rare diseases. This paper reviews the UCDC's accomplishments over the first 6years, including how the Consortium was developed and organized, clinical research studies initiated, and the importance of creating partnerships with patient advocacy groups, philanthropic foundations and biotech and pharmaceutical companies.
| Item Type: | Journal Article, refereed, original work |
|---|---|
| Communities & Collections: | 04 Faculty of Medicine > Center for Integrative Human Physiology 04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic |
| DDC: | 570 Life sciences; biology 610 Medicine & health |
| Language: | English |
| Date: | 2010 |
| Deposited On: | 14 Jan 2011 21:48 |
| Last Modified: | 23 Nov 2012 14:08 |
| Publisher: | Elsevier |
| ISSN: | 1096-7192 |
| Publisher DOI: | 10.1016/j.ymgme.2010.01.014 |
| PubMed ID: | 20188616 |
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