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`BISOF e¥s Eonsortium
`
`ABOUT US
`
`fi AboutUs
`
`About UCDC
`
`The Urea Cycle Disorders Consortium (UCDC) consists of a team of physician scientists, neuropsychologists, nurses, genetic
`counselors, research staff, and patient advocates throughout the US, working together to improve the lives of people with urea cycle
`disorders.
`
`The UCDC is an international collaborative Consortium with sites in United States, Canada, and Europe. The sites have significant
`experience in the diagnosis and treatment as well as research of urea cycle disorders and are working together to improve the lives
`of people with urea cycle disorders.
`As urea cycle disorders are rare, the number of participants that can be enrolled is limited and thus, the conduct of clinical research
`studies is very challenging. The Consortium provides a way for patients to join with doctors and researchers by participating in
`research studies. The greater the collaboration between researchers and patients, the more we can learn about these disorders.
`This is an important step in understanding how these diseases impact the lives of affected individuals and discover new and
`improved treatments.
`
`Mission
`
`The UCDC is dedicated to improving the lives of individuals affected by urea cycle disorders. The mission of the UCDC is to
`understand the natural history of the urea cycle disorders, conduct clinical research and clinical trials to discover new treatments,
`form partnership with patients, patient advocacy groups, and other stakeholders and train the next generation of rare disease
`investigators.
`We hope to accomplish our goals by:
`I Continuing the enrollment of a large group of patients with urea cycle disorders into an observational study called the
`Longitudinal Study of Urea Cycle Disorders. In this study, subjects are followed over time and clinical, neuropsychological,
`https://www.rarediseasesnetwork.org/cms/ucdc/About-Us
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