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RecruitingNCT06953505Updated May 27, 2026

At Home Ammonia Monitoring of Inborn Errors of Ammonia Metabolism

An interventional study of Ammonia Study Device in Urea Cycle Disorders, Organic Acidemias and Fatty Acid Oxidation Disorder, sponsored by Sequitur Health Corp.. Recruiting at 1 site in United States. Open to participants aged 12 Years and older. Per ClinicalTrials.gov, last updated 2026-05-27.

Sponsored by Sequitur Health Corp. · Not applicable, Interventional, and Device feasibility

From the registry’s dates

  • Started Sep 2025; still recruiting 1 year 1 month later.
Phase
Not applicable
Study type
Interventional
Enrollment
30
Allocation
Not applicable
Ages
12 Years and older
Sex
All
01

Study summary

The goal of this observational study is to learn if people with certain ammonia metabolism disorders will measure their ammonia levels at home.

The main question it aims to answer is:

  • Will participants measure their ammonia every day?

Participants will be asked to:

  • Attend two in-person study visits at the clinic.
  • Measure temperature, heart rate, and blood oxygen every day.
  • Complete a short survey every day.
  • Measure ammonia every day.
Read the detailed description

Ammonium (NH4+, ion in aqueous solution) exists in equilibrium with ammonia (NH3, gas) according to the equilibrium reaction: NH3+ + H+ ↔ NH4+, which has a pKa of 9.25.[1] Total ammonia is the sum of all ammonium ions (NH4+) and ammonia gas (NH3) present. At the physiologically relevant pH of blood (\~7.4), the ammonium/ammonia equilibrium is almost completely shifted to NH4+.[2] Total ammonia is colloquially referred to as ammonia in clinical medicine and clinical chemistry. Thus, the term ammonia in this document refers to total ammonia unless otherwise specified.

Ongoing metabolic processes in the human body continuously generate ammonia.[1,3-8] Ammonia is produced in all tissues of the body, mainly by the process of transamination followed by deamination, from biogenic amines and amino groups of nitrogenous bases (e.g., purines, pyrimidines), and within the intestine by intestinal bacterial flora through the action of urease on urea.[1, 7] Much of the ammonia produced in the intestine travels to the liver via the portal circulation. Ammonia produced by the kidneys variably clears the body in urine or enters the systemic circulation via the renal veins.[7-9]

Ammonia levels within an individual are highly dynamic over the course of a day based on dietary and exercise status.

Because of the dynamic ongoing metabolic cellular processes that generate and dispose of ammonia, accurate measurement of ammonia can be challenging; cellular components in blood may continue to create ammonia after the blood is drawn, amino acids may deaminate nonenzymatically or enzymatically. Blood samples should be immediately measured. If not immediately measured, then blood samples should be kept on ice and measured within 30 minutes of collection.

Ammonia is toxic to the central nervous system.[10]

Increased ammonia within the blood (hyperammonemia) may be caused by a variety of factors, including:

Conditions associated with either acute or chronic liver dysfunction, including, but not limited to:

Non-viral hepatitis (e.g., autoimmune hepatitis, alcoholic hepatitis, drug-induced hepatitis, ischemic hepatitis) Viral hepatitis (e.g., A, B, C, D, E, cytomegalovirus (CMV), Epstein-Barr virus (EBV) rubella (measles)) Reye's syndrome Cirrhosis End Stage Liver Disease

Certain inborn errors of metabolism including, but not limited to:

Urea cycle disorders Organic acidemias Fatty acid oxidation disorders Gastrointestinal bleeding Certain infections (including those caused by urease-producing bacteria)

Various medications, including, but not limited to:

Valproic acid Topiramate Carbamazepine Measurable changes in cognition may be associated with hyperammonemia. With either acute or chronic liver dysfunction, hepatic encephalopathy or hepatic coma may occur with hyperammonemia.

With an inborn error of metabolism affecting ammonia metabolism, a hyperammonemic crisis may occur with hyperammonemia.

Ammonia levels may increase with increasing dietary protein intake. Ammonia levels can vary throughout the day.

This Ammonia Device consists of a reusable instrument and a single-use cartridge based system that accepts a single drop of whole blood. It operates on the photometric method. The System measures the color change of a dye in the Cartridge in response to the amount of ammonia in a fixed volume of sample. Ammonia Device system. This is an investigational use only device and the performance characteristics of this product have not been established.

[ 1 ] Adeva, M. M.; Souto, G.; Blanco, N.; Donapetry, C. Ammonium metabolism in humans. Metabolism 2012, 61 (11), 1495-1511. DOI: 10.1016/j.metabol.2012.07.007.

[ 2 ] Bates, R. G.; Pinching, G. D. Acidic Dissociation Constant of Ammonium Ion at 0 to 50°C and the Base Strength of Ammonia. Journal of Research of the National Bureau of Standards 1949, 42, 419-430. DOI: 10.6028/jres.042.037.

[ 3 ] Patel, R.; Kaemingk, B. D.; Carey, W. A.; Block, D. R.; Madigan, T. Proposed Plasma Ammonia Reference Intervals in a Reference Group of Hospitalized Term and Preterm Neonates. The Journal of Applied Laboratory Medicine 2020, 5 (2), 363-369. DOI: 10.1093/jalm/jfz001.

[ 4 ] Berry, S. A.; Lichter-Konecki, U.; Diaz, G. A.; McCandless, S. E.; Rhead, W.; Smith, W.; LeMons, C.; Nagamani, S. C. S.; Coakley, D. F.; Mokhtarani, M.; et al. Glycerol phenylbutyrate treatment in children with urea cycle disorders: Pooled analysis of short and long-term ammonia control and outcomes. Molecular Genetics and Metabolism 2014, 112 (1), 17-24. DOI: 10.1016/j.ymgme.2014.02.007.

[ 5 ] Häberle, J.; Burlina, A.; Chakrapani, A.; Dixon, M.; Karall, D.; Lindner, M.; Mandel, H.; Martinelli, D.; Pintos-Morell, G.; Santer, R.; et al. Suggested guidelines for the diagnosis and management of urea cycle disorders: First revision. Journal of Inherited Metabolic Disease 2019, 42 (6), 1192-1230. DOI: 10.1002/jimd.12100.

[ 6 ] Lee, B.; Diaz, G. A.; Rhead, W.; Lichter-Konecki, U.; Feigenbaum, A.; Berry, S. A.; Le Mons, C.; Bartley, J. A.; Longo, N.; Nagamani, S. C.; et al. Blood ammonia and glutamine as predictors of hyperammonemic crises in patients with urea cycle disorder. Genet Med 2015, 17 (7), 561-568. DOI: 10.1038/gim.2014.148 From NLM.

[ 7 ] Weiner, I. D.; Hamm, L. L. Molecular mechanisms of renal ammonia transport. Annu Rev Physiol 2007, 69, 317-340. DOI: 10.1146/annurev.physiol.69.040705.142215.

[ 8 ] Levitt, D. G.; Levitt, M. D. A model of blood-ammonia homeostasis based on a quantitative analysis of nitrogen metabolism in the multiple organs involved in the production, catabolism, and excretion of ammonia in humans. Clin Exp Gastroenterol 2018, 11, 193-215. DOI: 10.2147/CEG.S160921.

[ 9 ] Mohiuddin, S. S.; Khattar, D. Biochemistry, Ammonia. In StatPearls, 2025. [ 10 ] Balistreri, W.; Rej, R. Liver Function. In Tietz Fundamentals of Clinical Chemistry. 4th ed.Philadelphia, Burtis, C., Ashwood, E. Eds.; WB Saunders, 1996; pp 539-568.

02

Conditions studied

  • Urea Cycle Disorders
  • Organic Acidemias
  • Fatty Acid Oxidation Disorder
  • Ammonia; Metabolic Disorder
03

In context

Urea Cycle Disorders, Inborn

66 studies on the registry are indexed under Urea Cycle Disorders, Inborn; 14 are open to participants now.

This study's planned enrollment of 30 is above the median of 17 across 39 interventional studies indexed under Urea Cycle Disorders, Inborn.

Browse Urea Cycle Disorders, Inborn studies →

Lead sponsor

This is the only study on the registry with Sequitur Health Corp. as lead sponsor.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
12 Years and older
Sexes eligible
All
Accepts healthy volunteers
No

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

  • Confirmed ammonia disorder such as

    • Ornithine transcarbamylase deficiency
    • Systemic primary carnitine deficiency
    • Type I citrullinemia
    • Argininosuccinic aciduria
    • Isolated methylmalonic acidemia
    • Type II citrullinemia
    • Propionic acidemia
    • Isovaleric acidemia
    • Multiple acyl-CoA dehydrogenase deficiency
    • Pyruvate carboxylase deficiency
    • Argininemia (arginase deficiency)
    • Carbamoyl phosphate synthase I deficiency
    • Dihydrolipoamide dehydrogenase deficiency
    • Lysinuric protein intolerance
    • Hyperornithinemia-hyperammonemia-homocitrullinuria
    • Carnitine-acylcarnitine translocase deficiency
    • Carbonic anhydrase VA deficiency
    • N-acetyl glutamate synthetase deficiency
  • English Literacy

Exclusion criteria

Exclusion Criteria:

  • Incarcerated
  • Presence of a non-inborn error of metabolism medical condition associated with abnormal ammonia metabolism (e.g., end stage liver disease).
  • Unable to read in English
05

Study design

Phase
Not applicable
Primary purpose
Device feasibility
Allocation
Not applicable
Intervention model
Single group
Masking
None (open label)
Enrollment
30 participants (estimated)

Study arms

  • Experimental
    Ammonia Device

    Diagnostic Test: Ammonia Study Device

Interventions

  • Diagnostic testAmmonia Study Device

    Ammonia study device for capillary ammonia measurement

06

What researchers measure

Primary outcomes

  1. Percentage of daily ammonia measurements completed.

    Daily ammonia measurements will be completed on the ammonia study device. A single participant will have a single device. The device will store information about the time, date, and results from the measurements completed. The primary hypothesis is that participants will complete 90% of the daily ammonia measurements during their individual study periods.

    Time frame: through individual participant study completion - approximately 240 days per participant with an optional 120 day additional extension period available.

Secondary outcomes

  1. Descriptive Statistics and Correlations

    After the study is complete, descriptive statistics (mean, median, range) will be calculated for individual participants for the study for the quantitative home measurements (temperature, heart rate, pulse oxygenation, and capillary ammonia). Descriptive statistics (mean, median, range) will be calculated for all aggregated participant data for the study for the quantitative home measurements (temperature, heart rate, pulse oxygenation, and capillary ammonia). The strength of correlations between quantitative values and participant self reported survey information and/or medical record documented clinical events will be investigated.

    Time frame: From enrollment through study completion, this is an average of 240 days per participant. If a participant chooses to participate in the optional study extension then the time frame will be approximately 360 days per participant.

07

Study locations

1 of 1 sites recruiting
  • Oregon Health & Science University
    Portland, Oregon 97239-3098, United States
    Recruiting
    • Amy C. Yang, M.D. · Contact503-494-8307
    • Amy C Yang, M.D. · Principal investigator
    • Brian Scottoline, M.D., Ph.D · Sub investigator
    • Kimberly Kripps, M.D. · Sub investigator
08

References and documents

Study documents

PDFs hosted by the registry, ClinicalTrials.gov.

Individual participant data

Plan to share: Yes — Deidentified primary outcome participant data sets for results used in publications will be made available for sharing at the time the results are published in a peer-review publication. Deidentified secondary outcome participant data sets will be made available upon request to Sequitur Health Corp. after a data sharing agreement is signed.

Supporting information: Study protocol, Informed consent form

Time frame: Upon publication in a peer-reviewed publication and in perpetuity once the publication is available.

Access criteria: All peer reviewed publications will be published open-access so anyone with an internet connection will be able to access the publication, the data contained within the publication, and any supplementary information to the publication. Secondary outcome individual participant data that may not be included in a publication will be made available after a data sharing agreement is executed between the receiving party and Sequitur Health Corp.. To request secondary outcome data, after the completion of the study, please contact Sequitur Health Corp. at info@sequiturhealth.com or 1-855-445-3889.

09

Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on May 27, 2026, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT06953505
Lead sponsor
Sequitur Health Corp.
Responsible party
Sponsor
First posted
May 1, 2025
Start date
Sep 23, 2025
Primary completion
Jul 2027 (estimated)
Completion
Aug 2027 (estimated)
Last update
May 27, 2026

Study contacts

Marylaura Thomas, Ph.D.
Contact
info@sequiturhealth.com
1-855-445-3889
Marylaura L Thomas, Ph.D.
principal investigator · Sequitur Health Corp.
Leslie F. Thomas, M.D.
study director · Sequitur Health Corp.

Oversight

Data monitoring committee
Yes
FDA-regulated drug
No
FDA-regulated device
Yes
View the source record on ClinicalTrials.gov ↗

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