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About The Contact Registry

The UCDC Patient Contact Registry is a method by which patients (and their families) with urea cycle disorders can register themselves to be contacted in the future about clinical research opportunities. An online Registry form exists for all the UCDC diseases currently being studied:

• N-Acetylglutamate Synthase (NAGS) Deficiency
• Carbamyl Phosphate Synthetase (CPS) Deficiency
• Ornithine Transcarbamylase (OTC) Deficiency
• Argininosuccinate Synthetase Deficiency (Citrullinemia I)
• Citrin Deficiency (Citrullinemia II)
• Argininosuccinate Lyase Deficiency (Argininosuccinic Aciduria)
• Arginase Deficiency (Hyperargininemia)
• Ornithine Translocase Deficiency (HHH Syndrome)

Download the Contact Registry Paper Form

The Rare Diseases Network has created a paper version of the Contact Registry form. This form can be downloaded by Physicians and Advocacy Groups in order to provide the form to those who need assistance outside the internet.

• Download: UCDC Contact Registry Paper Form [.pdf]

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The Urea Cycle Disorders Consortium (UCDC) is a part of NIH Rare Diseases Clinical Research Network (RDCRN). Funding and/or programmatic support for this project has been provided by the National Institute of Child Health and Human Development (NICHD) and the NIH Office of Rare Diseases Research (ORDR). Read Disclaimer >