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Italian NCL Registry: a Registry for NCL as an Integration Tool for Future Therapeutic Strategies

StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗
Record status
This record was last updated March 27, 2026 (before its estimated July 19, 2026 completion). Its status may not reflect the trial's current state.

Record History

  1. Site details revisedv2
  2. 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  • Stopped: an ongoing trial was terminated, suspended or withdrawn.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.
The goal is to create a solid and harmonious disease registry of patient affected by neuronal ceroid lipofuscinosis (NCLs) that facilitates the collection and management of patients' data over time encouraging the research and the development of future clinical trials. In-depth clinical phenotyping will develop significant clinical outcome measures that can be used in clinical trials and will allow the phenotypic complexity of the disease to be captured with the use of validated clinical scales, biomarkers and so-called patient reported outcomes (PROs).
Trial Details
NCT Number NCT06844877
Lead Sponsor IRCCS Fondazione Stella Maris
Collaborators: Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta, Bambino Gesù Hospital and Research Institute
Conditions
(from sponsor)		 Neuronal Ceroid Lipofuscinosis
Related terms Neuronal Ceroid-Lipofuscinoses
Enrollment 50 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov