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Found 2 clinical trials
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. 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, …

  • 03 Nov, 2021
  • 1 location
Clinical and Neuropsychological Investigations in Batten Disease

This study aims to assess the natural history of Batten disease (Neuronal Ceroid Lipofuscinosis) by obtaining information about the motor, behavioral, and functional capabilities of individuals with Batten disease. This study will also refine and validate the Unified Batten Disease Rating Scale (UBDRS) as a clinical rating instrument for Batten …

ceroid lipofuscinosis
  • 17 May, 2022
  • 1 location