Actively Recruiting
Clinical and Neuropsychological Investigations in Batten Disease
Led by University of Rochester · Updated on 2025-09-12
500
Participants Needed
1
Research Sites
1617 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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 disease.
CONDITIONS
Official Title
Clinical and Neuropsychological Investigations in Batten Disease
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Child or adult with any form of Batten disease
- Parent or legal guardian of a child or adult with any form of Batten disease
You will not qualify if you...
- Parent or guardian unable or unwilling to provide permission for the affected individual
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
University of Rochester
Rochester, New York, United States, 14642
Actively Recruiting
Research Team
A
Amy Vierhile, RN PNP
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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