Clinical and Neuropsychological Investigations in Batten Disease

Recruiting now

Conditions studied: Neuronal Ceroid Lipofuscinosis, Neuronal Ceroid Lipofuscinosis CLN1, Neuronal Ceroid Lipofuscinosis CLN2, Neuronal Ceroid Lipofuscinosis CLN3, Neuronal Ceroid Lipofuscinosis CLN5, Neuronal Ceroid Lipofuscinosis CLN6, Neuronal Ceroid Lipofuscinosis CLN7, Neuronal Ceroid Lipofuscinosis CLN8, Neuronal Ceroid Lipofuscinosis CLN10, Batten Disease

In brief

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.

Key facts

Study ID

NCT01873924

Run by

University of Rochester

People needed

500

Starts

2004-08-01

Expected to finish

2035-08-01

Last updated by the study team

2025-09-12

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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 may not qualify if…

• parent or guardian unable or unwilling to provide permission for the affected individual

Where it is running

• University of Rochester — Rochester, New York, United States (enrolling)

Full record on ClinicalTrials.gov

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