Orphan Europe Carbaglu® Surveillance Protocol
Nicholas Ah Mew
30 participants
Apr 1, 2012
OBSERVATIONAL
Conditions
Summary
The purpose of this study is to conduct post-marketing surveillance of carglumic acid (Carbaglu) to obtain long-term clinical safety information. Carglumic acid was approved by the United States Food and Drug Administration (FDA) for treatment of acute hyperammonemia due to N-acetylglutamate synthase (NAGS) deficiency. Much of the FDA-required data is already collected through the Longitudinal Study of Urea Cycle Disorders (RDCRN Protocol #5101). This study will collect additional data on adverse events (interim events), adverse reactions, pregnancy, and fetal outcomes.
Eligibility
Inclusion Criteria3
- Confirmed diagnosis of NAGS deficiency or suspicion of NAGS deficiency
- Carbaglu intake for the treatment of NAGS
- Enrolled in the Longitudinal Study of Urea Cycle Disorders (RDCRN protocol #5101)
Exclusion Criteria7
- Cases of hyperammonemia caused by other urea cycle disorders
- Organic acidemia, lysinuric protein intolerance
- Mitochondrial disorders
- Congenital lactic acidemia,
- Fatty acid oxidation defects
- Primary liver disease will be excluded
- Individuals with extreme low birth weight (<1,500 grams) will be also excluded.
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Locations(3)
View Full Details on ClinicalTrials.gov
For the most up-to-date information, visit the official listing.
NCT03409003