RecruitingNCT03409003

Orphan Europe Carbaglu® Surveillance Protocol


Sponsor

Nicholas Ah Mew

Enrollment

30 participants

Start Date

Apr 1, 2012

Study Type

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)

Children's National Medical Center

Washington D.C., District of Columbia, United States

Children's Hospital Boston (UCDC New England Center)

Boston, Massachusetts, United States

Icahn School of Medicine at Mount Sinai

New York, New York, United States

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NCT03409003