deltatrials
Recruiting OBSERVATIONAL NCT03409003

Orphan Europe Carbaglu® Surveillance Protocol

Sponsor: Boston Children's Hospital

Conditions N-acetylglutamate Synthase (NAGS) Deficiency
Updated 13 times since 2018 Last updated: Feb 6, 2024 Started: Apr 30, 2012 Primary completion: Jul 31, 2026 Completion: Jan 31, 2027
This information is for research purposes only and is not medical advice. Consult a healthcare provider before making any medical decision.

A observational or N/A phase clinical study on N-acetylglutamate Synthase (NAGS) Deficiency, this trial is actively recruiting participants. The trial is conducted by Boston Children's Hospital and has accumulated 13 data snapshots since 2012. Longitudinal tracking of this trial contributes to a broader understanding of treatment development timelines.

Status Flow

~Feb 2018 – ~Apr 2018 · 59 days · monthly snapshot~Apr 2018 – ~Jun 2018 · 2 months · monthly snapshot~Jun 2018 – ~Feb 2019 · 8 months · monthly snapshot~Feb 2019 – ~Mar 2020 · 13 months · monthly snapshot~Mar 2020 – ~Sep 2020 · 6 months · monthly snapshot~Sep 2020 – ~Jan 2021 · 4 months · monthly snapshot~Jan 2021 – ~Mar 2021 · 59 days · monthly snapshot~Mar 2021 – ~Sep 2022 · 18 months · monthly snapshot~Sep 2022 – ~Mar 2024 · 18 months · monthly snapshot~Mar 2024 – ~Jul 2024 · 4 months · monthly snapshot~Jul 2024 – ~Sep 2024 · 2 months · monthly snapshot~Sep 2024 – ~Sep 2025 · 12 months · monthly snapshot~Sep 2025 – present · 12 months · monthly snapshot

Change History

13 versions recorded

  1. Sep 2025 — Present [monthly]

    Recruiting

  2. Sep 2024 — Sep 2025 [monthly]

    Recruiting

  3. Jul 2024 — Sep 2024 [monthly]

    Recruiting

  4. Mar 2024 — Jul 2024 [monthly]

    Recruiting

  5. Sep 2022 — Mar 2024 [monthly]

    Recruiting

▶ Show 8 earlier versions

  1. Mar 2021 — Sep 2022 [monthly]

    Recruiting

  2. Jan 2021 — Mar 2021 [monthly]

    Recruiting

  3. Sep 2020 — Jan 2021 [monthly]

    Recruiting

  4. Mar 2020 — Sep 2020 [monthly]

    Recruiting

  5. Feb 2019 — Mar 2020 [monthly]

    Recruiting

  6. Jun 2018 — Feb 2019 [monthly]

    Recruiting

  7. Apr 2018 — Jun 2018 [monthly]

    Recruiting

    Phase: NA → None

  8. Feb 2018 — Apr 2018 [monthly]

    Recruiting NA

    First recorded

Apr 2012

Trial started

Per CT.gov start date — pre-dates our first snapshot

Eligibility Summary

No eligibility information available.

Contact Information

Sponsor contact:
  • Boston Children's Hospital
  • Icahn School of Medicine at Mount Sinai
  • Nicholas Ah Mew
Data source: Children's National Research Institute

For direct contact, visit the study record on ClinicalTrials.gov .

Study Locations