Phase
Condition
Urea Cycle Disorder
Hyperargininemia
Phenylketonuria
Treatment
N/AClinical Study ID
Ages < 70 All Genders
Study Summary
Eligibility Criteria
Inclusion
Inclusion Criteria:
Between 1 day - 70 years of age
Viable neonates, neonates with uncertain viability are excluded Diagnosed with one ofthe following five inborn errors of metabolism: NAGS, CPSI,PA, MMA, or OTC deficiency.
Diagnostic requirements:
NAGS deficiency - Identification of pathogenic mutation and/or decreased (<20% ofcontrol) NAGS enzyme activity in liver
CPSI deficiency - decreased (<20% of control) CPSI enzyme activity in liverdeficiency of liver CPSI in the presence of normal or substantial activity of OTC (Tuchman et al 1980) and/or molecular confirmation of deleterious mutations (Summary et al 2003).
High level of clinical suspicion of NAGS or CPSI deficiency - Failure to meetdiagnostic criteria for either NAGS or CPSI deficiency as listed above, but:
Recurrent hyperammonemic episodes (NH3 >70umol/l) with elevated plasmaglutamine (>/= 800umol/l)
Urinary orotate levels within normal limits (</= 5 umol/mmol urinecreatinine)
Absence of argininosuccinic acid in blood or urine
Low or normal level of citrulline (</=92umol/l) and arginine (</= 179umol/l) and ornithine (</=159umol/l) within normal limits in blood
OTC deficiency- Identification of pathogenic mutation and/or-pedigree analysisconsistent with familial hyperammonemia segregating in an x-linked semi-dominantpattern and/or -<20% of control OTC activity in liver and/or -elevated urinaryorotate (>20%umol/mmol creatinine) after allopurinol challenge test
PA and MMA- diagnostic urine organic acid analysis and confirmation of absence ofresponsiveness to biotin and vitamin B12 respectively.
Exclusion
Exclusion Criteria:
Subjects acutely ill on day of the study
Pregnant females- documentation of a negative pregnancy test within a week prior totesting is required for females 12 years and older, unless having a menstrual periodduring that week or other circumstances which preclude pregnancy (e.g. hysterectomy,menopause)
Subjects with hyperammonemia caused by other urea cycle disorders, lysinuric proteinintolerance, mitochondrial disorders, congenital lactic academia, fatty acid oxidationdefects and primary liver disease
Subjects requiring a peripherally inserted central catheter (PICC) for blood draws mayneed to be moderately sedated and are excluded
Subjects with hemoglobin < 9 g/dl
Study Design
Study Description
Connect with a study center
Childrens Research Institute
Washington, District of Columbia 20010
United StatesSite Not Available
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