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Study identifier: NCT03409003 Synced from ClinicalTrials.gov · July 29, 2026
● Recruiting

Orphan Europe Carbaglu® Surveillance Protocol

Condition: N-acetylglutamate Synthase (NAGS) Deficiency  ·  Sponsor: Nicholas Ah Mew

PhaseN/A
Planned participants30
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersNo

About this study

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.

This description comes directly from the study's public registry record.

Talk to the study team

Jennifer Seminara, MPH  ·  2023066489  ·  jseminar@childrensnational.org

Always discuss trial participation with your own doctor first.

Locations (3)

Children's National Medical CenterWashington D.C., District of Columbia, United StatesRecruiting
Children's Hospital Boston (UCDC New England Center)Boston, Massachusetts, United StatesRecruiting
Icahn School of Medicine at Mount SinaiNew York, New York, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT03409003