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Mol Genet Metab. 2010;100 Suppl 1:S97-105. doi: 10.1016/j.ymgme.2010.01.014. Epub 2010 Feb 10.

Establishing a consortium for the study of rare diseases: The Urea Cycle Disorders Consortium.

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  • 1Children's National Medical Center, Washington, DC 20010, USA.

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.

PMID:
20188616
PMCID:
PMC2858794
DOI:
10.1016/j.ymgme.2010.01.014
[PubMed - indexed for MEDLINE]
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