Clinical and Neuropsychological Investigations in Batten Disease
Recruiting
Observational Study
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
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 500 (estimated)
- Sponsor
- University of Rochester · Other
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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.
Trial Locations
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Eligibility Criteria
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
Contacts