Sponsors

Lead Sponsor

University of South Florida

Collaborators

National Institutes of Health (NIH)

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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RECRUITING

Pilot Study: Urea Cycle Disorders Practice Patterns and Outcomes Assessment

What this study is about

Clareo turns complex medical information into clear understanding you can use.

Sponsors

Related studies

Long-term Follow-up (LTFU) Study of Participants in Any iECURE Protocol Using an Investigational Product (IP)

At Home Ammonia Monitoring of Inborn Errors of Ammonia Metabolism

To Evaluate the Safety of Long-term Use of HPN-100 in the Management of Urea Cycle Disorders (UCDs)

Study of the Safety and Tolerability of HPN-100 Compared to Sodium Phenylbutyrate in Children With Urea Cycle Disorders

Study of the Safety of HPN (Hyperion)-100 for the Long-Term Treatment of Urea Cycle Disorders (Treat UCD)

Trial snapshot

Condition

Locations shown

For caregivers