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`UCDC> About Us
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`10/25/2017
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`Search...
`= Home
`=
`-About Us
`= Participating Clinical Centers
`= +Learn More
`= Disorder Definitions
`= FAQs
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`‘© RDCRN| Initiative of NCATS
`
`rea
`Cycl
`.
`Hes ats Consortium
`
`ABOUT US
`
`ft About Us
`
`About UCDC
`
`The Urea Cycle Disorders Consortium (UCDC)consists of a team of physician scientists, neuropsychologists, nurses, genetic
`counselors, researchstaff, and patient advocates throughout the US, working together to improvethe lives of people with urea cycle
`disorders.
`
`The UCDCisaninternational collaborative Consortium with sites in United States, Canada, and Europe.Thesites have significant
`experiencein the diagnosis and treatment as well as researchof urea cycle disorders and are working together to improvethelives
`of people with urea cycle disorders.
`Asurea cycle disorders are rare, the numberofparticipants that can be enrolledis limited and thus, the conduct ofclinical research
`studiesis very challenging. The Consortium provides a way for patients to join with doctors and researchersbyparticipating in
`researchstudies. 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
`improvedtreatments.
`
`Mission
`
`The UCDCis dedicated to improvingthelivesof individuals affected by urea cycle disorders. The mission of the UCDCis to
`understandthe natural history of the urea cycle disorders, conductclinical research andclinical trials to discover new treatments,
`form partnership with patients, patient advocacy groups, and other stakeholders andtrain the next generationof rare disease
`investigators.
`Wehopeto accomplish our goals by:
`= Continuing the enrollmentof 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 overtime andclinical, neuropsychological,
`https://www.rarediseasesnetwork.org/cms/ucdc/About-Us
`
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