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Heather Adams, PhD
University of Rochester Medical Center, Rochester NY
Characterizing sleep dysfunction in individuals with NCL disorders
The University of Rochester Batten Center will address an area of significant need in the field of Batten disease - an improved understanding of sleep disorders in individuals affected by NCL disorders. For this study in particular, the Rochester team will carefully characterize the sleep architecture and family impacts related to sleep disorders, in individuals with CLN2 disease and CLN3 disease. This will be the first-ever such study of sleep function in a diagnostically and clinically rigorously defined group of individuals affected by these two NCL disorders, and will also be the first ever study to describe the associated sleep, mood, and quality of life impacts of sleep disorders upon parental caregivers. This is a critical first step to inform development of rational therapies for sleep dysfunction in these and other NCL disorders.