Natural History and Longitudinal Clinical Assessments in NCL / Batten Disease, the International DEM-CHILD Database

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.

NCT Number	NCT04613089
Lead Sponsor	Universitätsklinikum Hamburg-Eppendorf
Conditions	Neuronal Ceroid Lipofuscinosis, Batten Disease, CLN1 Disease, CLN2 Disease, CLN3 Disease, CLN4 Disease, CLN5 Disease, CLN6 Disease +7 more
Enrollment	500 participants
Start Date	2020-04-08
Primary Completion	2050-04-08 (estimated)
Study Completion	2050-04-08 (estimated)
Updated on ClinicalTrials.gov	2021-10-29