Clinical and Neuropsychological Investigations in Batten Disease

ConditionsNeuronal 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

Trial statusRecruiting

Trial phaseNot listed

Trial typeObservational

Biological sexAll

AgeNot listed

SponsorUniversity of Rochester

About this trial

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 criteria

Qualifiers

child or adult with any form of Batten disease

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

Disqualifiers

None

Trial design

Treatments tested in this trial

Not listed

Trial groups

500 Participants

are grouped into 1 trial group

Sponsors and collaborators

University of Rochester

Lead sponsor

Source ClinicalTrials.gov