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Study identifier: NCT01873924 Synced from ClinicalTrials.gov · July 29, 2026
● Recruiting

Clinical and Neuropsychological Investigations in Batten Disease

Condition: Neuronal Ceroid Lipofuscinosis · Neuronal Ceroid Lipofuscinosis CLN1 · Neuronal Ceroid Lipofuscinosis CLN2  ·  Sponsor: University of Rochester

PhaseN/A
Planned participants500
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersNo

About this study

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.

This description comes directly from the study's public registry record.

Talk to the study team

Amy Vierhile, RN PNP  ·  (585)275-4762  ·  amy_vierhile@urmc.rochester.edu

Always discuss trial participation with your own doctor first.

Locations (1)

University of RochesterRochester, New York, United StatesRecruiting

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Source record: clinicaltrials.gov/study/NCT01873924