Clinical and Neuropsychological Investigations in Batten Disease

Status: Recruiting
Location: See location...
Study Type: Observational [Patient Registry]
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: No
View:

• child or adult with any form of Batten disease

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

Locations
United States
New York
University of Rochester
Recruiting
Rochester
Contact Information
Primary
Amy Vierhile, RN PNP
amy_vierhile@urmc.rochester.edu
(585)275-4762
Time Frame
Start Date: August 2004
Estimated Completion Date: July 2025
Participants
Target number of participants: 500
Treatments
Batten disease
Individuals with any form of Batten disease (Neuronal Ceroid Lipofuscinosis)
Sponsors
Leads: University of Rochester

This content was sourced from clinicaltrials.gov

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