Urea Cycle Disorders Clinical Trial
Official title:
Pilot Study: Urea Cycle Disorders Practice Patterns and Outcomes Assessment
The purpose of this study is to determine if patients participating in "The Longitudinal Study of Urea Cycle Disorders" are different than participants in the Urea Cycles Disorders Consortium (UCDC) Rare Diseases Clinical Research Network (RDCRN) Contact Registry and to determine if patients are a good source of medical information.
Participants enrolled in the RDCRN UCDC Contact Registry will receive an email inviting them
to participate in the study. Interested participants will be directed to the informed consent
document. After agreeing to participate, participants will be directed to the study web
portal. The study web portal will be developed and maintained by the Data Management and
Coordinating Center at the University of South Florida (USF).
Participants will complete several questionnaires about their urea cycle disorder including
diagnosis and treatment information and quality of life.
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