Clinical and Neuropsychological Investigations in Batten Disease

Part of paid clinical trials in Rochester, New York.

Sponsor
University of Rochester
Study ID
NCT01873924
Status
Recruiting
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Conditions

  • Batten Disease
  • Neuronal Ceroid Lipofuscinosis
  • Neuronal Ceroid Lipofuscinosis CLN1
  • Neuronal Ceroid Lipofuscinosis CLN10
  • Neuronal Ceroid Lipofuscinosis CLN2
  • Neuronal Ceroid Lipofuscinosis CLN3
  • Neuronal Ceroid Lipofuscinosis CLN5
  • Neuronal Ceroid Lipofuscinosis CLN6
  • Neuronal Ceroid Lipofuscinosis CLN7
  • Neuronal Ceroid Lipofuscinosis CLN8

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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 Dates

Start date
Aug 31, 2004
Status verified
Sep 2025
Primary completion
Aug 31, 2035
Completion
Aug 31, 2035

Study Design

Enrollment
500 participants (estimated)

Arms

  • Arm: Batten disease
    Individuals with any form of Batten disease (Neuronal Ceroid Lipofuscinosis)

Primary Outcome Measure

Unified Batten Disease Rating Scale (UBDRS), assessing the severity and change in physical, seizure, behavioral, and functional aspects of individuals with Batten Disease. [ Time Frame: Annual Assessments for up to 20 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
University of RochesterRochesterNew York14642
Amy Vierhile, RN PNP
[email protected]
(585) 275-4762

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By research site
University of Rochester· Rochester, NY

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