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Natural History Study for Patients With Angelman Syndrome

Study acronym: NatHisAngelman
StatusRecruiting
PhaseNot specified
Started
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Record History

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  1. Re-verified, no change to tracked fieldsv5
  2. Enrollment target: 15 to 30
    • Study description revised
    • Site details revised
    v4
  3. Lead sponsor: Centre Hospitalier Régional de la Citadelle to Centre Hospitalier Universitaire de Liege
    • Collaborators expanded, about 7 words
    v3
  4. Primary endpoints: 7 to 11
    • Secondary endpoints: details revised at 2 of 2 entries
    v2
  5. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
This study is a 9-year natural history study for patients with Angelman syndrome in Belgium (a genetic neurodevelopmental disorder, affecting 500,000 individuals in the world). It includes a 3-year recruitment phase, a 5 year follow-up and a year to analyze the collected data. The investigators plan to include 30 patients with a semi-annual follow-up for 4 years. The investigators will collect relevant retrospective and prospective data using age-standardized scales and questionnaires for functional motor assessments and global developmental assessment.
Trial Details
NCT Number NCT06229769
Lead Sponsor Centre Hospitalier Universitaire de Liege
Collaborators: Centre Hospitalier Régional de la Citadelle, SYSNAV
Conditions
(from sponsor)		 Angelman Syndrome
Related terms Angelman Syndrome
Enrollment 30 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov