Home › Neuronal Ceroid-Lipofuscinoses › NCT01873924

Clinical and Neuropsychological Investigations in Batten Disease

Who can join

All ages · All sexes

Inclusion Criteria:

* child or adult with any form of Batten disease
* parent or legal guardian of a child or adult with any form of Batten disease

Exclusion Criteria:

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

About the 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.

Sponsor: University of Rochester · Participants: 500 · Started: 2004-08

Contact the study team

• Amy Vierhile, RN PNP · Phone: (585)275-4762

Official record on ClinicalTrials.gov — NCT01873924

Locations in the U.S.

Conditions

• Neuronal Ceroid-Lipofuscinoses

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.