Children's National Medical Center, Washington, DC 20010, USA.
Mol Genet Metab. 2010;100 Suppl 1(Suppl 1):S97-105. doi: 10.1016/j.ymgme.2010.01.014. Epub 2010 Feb 10.
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.
尿素循环障碍联盟（UCDC）是作为美国国立卫生研究院（NIH）建立的更大网络的一部分而成立的，旨在研究罕见疾病。本文回顾了 UCDC 在最初的 6 年中取得的成就，包括联盟的发展和组织方式、启动的临床研究，以及与患者权益团体、慈善基金会以及生物技术和制药公司建立伙伴关系的重要性。
