University of Rochester Batten Center

The URBC is going on the road to Lincoln, Nebraska to take clinical research to YOU!

Help Us Understand Movement in CLN2 and CLN3 Disease

Researchers at the University of Rochester Batten Center (URBC) are conducting a study to learn how walking patterns may reveal subtle changes in disease progression—using the power of Artificial Intelligence (AI)! We will use a special computer program that analyzes videos to identify and track how human body parts move.

Who can participate?
• Children and young adults with CLN2 or CLN3 disease
• Able to walk with or without assistance

What does the study involve?
• One brief 30-60 minute study visit at the BDSRA Foundation Meeting
• Video recording of walking and a neurological assessment
• Home video of walking recorded after the visit

Families will receive a $50 stipend for participating.

Study PI:Jennifer Vermilion, MD
Contact: [email protected]

SIGN UP HERE: https://calendly.com/urbc

THURSDAY JULY 11 STUDY VISITS AVAILABLE!

At the 2024 BDSRA Foundation meeting, researchers from the University of Rochester Batten Center (URBC) and the Foxe Lab (also at University of Rochester) will arrive early to provide opportunities for early research participation before the meeting. Early research visits will be for the URBC Natural History Study and the Foxe Lab EEG auditory perception study.

UR study teams will cover the cost of a hotel room for families for Wednesday July 10 if they schedule a research visit with the URBC and/or the Foxe lab for Thursday July 11th. The research teams will also stay at the conference hotel until the afternoon on Sunday, July 14 to accommodate families, and will see subjects on July 12 and 13 as well.

Please contact Amy Vierhile at (585) 275-4762 or [email protected] to hear more about the research projects and to make an appointment for your child to be seen.

NEW RESEARCH STUDY!

Characterizing Sleep in Batten DiseaseThe University of Rochester Batten Center announces a new study of sleep function inindividuals affected with CLN2 and CLN3 Batten disease. All study activities are based in thehome. Affected children are asked to provide a saliva sample to measure melatonin level, and towear a wrist-watch style activity monitor. To learn more about the study and whether yourchild might be eligible to participate, please contact us at: [email protected] or callStudy Coordinator Marianna Pereira-Freitas at: (585) 274-0205.