Condition: Neuronal Ceroid Lipofuscinosis · Sponsor: IRCCS Fondazione Stella Maris
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).
This description comes directly from the study's public registry record.
Filippo M Santorelli, Dr. · +39 050886275 · filippo.santorelli@fsm.unipi.it
Stefania Della Vecchia, Dr. · stefania.dellavecchia@fsm.unipi.it
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| IRCCS Fondazione Stella Maris | Pisa, Italy | Recruiting |
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Source record: clinicaltrials.gov/study/NCT06844877