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Natural History Study for Patients With Nemaline Myopathy in Belgium

Study acronym: Acti-Nemaline
StatusNot Yet Recruiting
PhaseNot applicable
Started
View on ClinicalTrials.gov ↗

Record History

  1. Start date: Dec 2025 to Aug 2026v3
  2. Start date: Sep 2025 to Dec 2025v2
  3. 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  • Stopped: an ongoing trial was terminated, suspended or withdrawn.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 is a prospective, longitudinal, observational study designed to characterize the natural history of Nemaline Myopathy (NM), a rare congenital neuromuscular disorder. The study will follow up to 10 participants of any age with genetically confirmed NM over a period of three years. Data will be collected during routine annual hospital visits and include clinical, motor, respiratory, and quality-of-life assessments. The goal is to improve clinical trial readiness by identifying disease-specific outcome measures and potential biomarkers.
Trial Details
NCT Number NCT07201636
Lead Sponsor Centre Hospitalier Universitaire de Liege
Collaborators: Centre Hospitalier Régional de la Citadelle, SYSNAV
Conditions
(from sponsor)		 Nemaline Myopathy
Related terms Myopathies, Nemaline
Enrollment 10 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov