Research Study Announcement
Study Title: Characterizing Sleep in Batten Disease
Principal Investigator: Heather Adams, PhD
Research sponsor: Batten Disease Support, Research, & Advocacy Foundation
The University of Rochester Batten Center is conducting a study of sleep function in individuals with CLN2 and CLN3 Batten disease.
What is involved? Affected individuals will provide saliva samples to test melatonin concentration and wear an actigraph (a wrist-watch style activity monitor). Parents/caregivers will assist the affected individual with study activities and will complete questionnaires.
Who may be eligible? Affected individuals who…
- have a confirmed genetic or enzyme-based diagnosis of CLN2 or CLN3 disease
- have any symptoms of CLN2 or CLN3 disease
- are at least 2 years old
- live at home with at least one primary caregiver
- have not taken oral melatonin in the past 2 weeks (before study participation begins), or
- have only taken it occasionally (no more than 3 times per week)
No travel is required! All study activities will take place at your own home. The affected child & parent will receive $200 (total for household) for participation in the research.
If you are interested in learning more about the study, please contact the study team at: BattenSleepStudy@URMC.Rochester.edu or call Study Coordinator, Marianna Pereira-Freitas at: (585) 274-0205.
