NCT06844877|Recruiting
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Sponsor study identifier
observational
50
1 country
1
Study Start
July 19, 2024
Actual (reported)Primary Completion
July 19, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Study Completion
July 19, 2027
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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).
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
July 19, 2027
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
July 19, 2024
Actual (reported)February 10, 2025
Actual (reported)February 25, 2025
Actual (reported)July 19, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
July 19, 2027
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Establishment of the NCL Italian Registry to systematically document the clinical presentation and natural history of patients affected by NCLs
We will record information related to NCL natural history in 10 patients
12 months
Subjects affected by NCLs with a genetic or ultrastructural characterization
IRCCS Fondazione Stella Maris
Pisa, 56128, Italy
Blood, urine, skin biopsy, muscle biopsy, cerebrospinal fluid (all samples are optional)
Filippo M Santorelli, Dr.
IRCCS Fondazione Stella Maris
First Submitted
February 10, 2025
First Posted
February 25, 2025
Study Start
July 19, 2024
Actual (reported)Primary Completion
July 19, 2026
Estimated (date passed)Longitudinal Assessment of Atypical Tripeptidyl Peptidase 1 Enzyme Deficiency Patients
Contact the study team to confirm eligibility.
This estimate has passed. The registry has not confirmed an actual date for this milestone.
Study Completion
July 19, 2027
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
March 27, 2026
Record last verified: 2026-03
The data collected during the clinical-instrumental-laboratory evaluations will be entered into the Italian NCL Registry in pseudonymized form. Each patient will be identified by a progressive code of the electronic CRF together with a unique alphanumeric identification code (automatically generated). This identification code will be used by the Center in place of the relevant name in each communication of the linked data. The Recruiting Center will be the only and exclusive entity able to associate the identification code with the personal data. The data collected in the Italian NCL Registry will be stored on RedCap in pseudonymized form.
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Source: ClinicalTrials.gov.
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