Condition: Neuronal Ceroid Lipofuscinosis · Batten Disease · CLN1 Disease · Sponsor: Universitätsklinikum Hamburg-Eppendorf
This is an observational study that aims at assessing the natural history of NCL diseases as part of the international DEM-CHILD Database. 1. Patient data are collected from medical records, patient questionnaires and routine follow up clinical examinations with focus on assessing progression in key areas of disease such as motor, language, cognition, seizures, vision, and behavior. 2. A local biorepository of samples from genetically defined NCL patients will be established as well as a virtual biorepository within the DEM-CHILD DB to be able to easily localize international availability of patient samples.
This description comes directly from the study's public registry record.
Miriam Nickel, MD · +4940741020440 · m.nickel@uke.de
Angela Schulz, MD, PhD · +4940741020440 · anschulz@uke.de
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| University Medical Center Hamburg-Eppendorf | Hamburg, Germany | Recruiting |
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Source record: clinicaltrials.gov/study/NCT04613089