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

NCT06844877 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 50

Last updated 2026-03-27

No results posted yet for this study

Summary

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).

Conditions

  • Neuronal Ceroid Lipofuscinosis

Sponsors & Collaborators

  • Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta

    collaborator OTHER

  • Bambino Gesù Hospital and Research Institute

    collaborator OTHER

  • IRCCS Fondazione Stella Maris

    lead OTHER

Principal Investigators

  • Filippo M Santorelli, Dr. · IRCCS Fondazione Stella Maris

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2024-07-19
Primary Completion
2026-07-19
Completion
2027-07-19

Countries

  • Italy

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06844877 on ClinicalTrials.gov