University of Rochester Batten Center

We would like to invite individuals with CLN3 disease to enroll in a new study that will help us prepare for future of NCL clinical trials. We are currently enrolling individuals remotely. This means you are able to participate from your own home! While participating remotely, you will complete a UBDRS assessment, cognitive testing, and participant questionnaires. Visits will occur once every 6 months for 3 years. Once it is safe to travel, we will bring you to Rochester to complete an MRI, EEG, gait assessment, and eye assessment. Healthy siblings may also be eligible to enroll! To learn more, call (585) 275-4762, email [email protected].

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The URBC is recruiting individuals with CLN3 disease to participate remotely in a new study! Visits will occur once every six months for three years. Once it is safe to travel, we will being you to Rochester to complete additional assessments. The purpose of the study is to prepare for future clinical trials for CLN3 disease. There are three main ways that we will do this. We are testing different tools and assessments to measure symptoms of CLN3 disease. We will examine ho...w useful, reliable, and practical these tools and assessments are for measuring symptoms of CLN3. We will look for changes in the brain over time to establish a biomarker for CLN3 disease progression. A biomarker is an objective, measurable characteristic of a biological process. In clinical trials, biomarkers are used to help determine whether a new treatment is effective. We will create materials designed to train other Batten disease researchers to use the UBDRS, a clinical assessment tool developed at the University of Rochester Batten Center. These training materials may be used in future clinical trials. Healthy siblings may also be eligible to enroll! To learn more, call (585) 275-4762, email [email protected].

There is one week left to have free access to a recent publication on education in Batten disease, Overview of Advances in Educational and Social Supports for Young Persons with NCL Disorders. This article was based upon an international collaboration among NCL experts in education, music therapy, social supports, and neuropsychology. Navigate to: Click on this Share Link to view and download the article! https://authors.elsevier.com/a/1bHyG3IQ%7Eq4Spp

Do you have a child with CLN3 Batten disease? As we prepare for future clinical trials, the URBC is conducting a new, exciting study! Study activities include a UBDRS assessment, cognitive testing, a gait assessment, an MRI and an eye exam. Given current safety concerns with COVID-19, we are currently offering the option to enroll remotely and complete some activities from home. Children with CLN3 disease and healthy siblings may be eligible. To learn more, call (585) 275-4762, email [email protected].

Check out this exciting news from Neurogene! https://www.neurogene.com//fda-grants-orphan-drug-designa/

Good morning! We are excited for day 2 of the virtual BDSRA meeting! Don’t forgot to stop by the URBC Zoom room and say hello. The Zoom room can be accessed by clicking the zoom link below. We’ll we there from 9-11. https://urmc.zoom.us/j/94951145062

Thirty minutes until our first virtual URBC coffee hour! Feel free to drop in to say hello or hear about URBC activities by clicking the link below! We will be available from 9-11:30 eastern time. https://urmc.zoom.us/j/94951145062

The URBC is gearing up for the virtual annual BDSRA meeting! We will be hosting virtual coffee hours on Friday and Saturday morning from 9:00am-11:30am eastern time. You can drop into our virtual meeting and chat with the URBC team by clicking the link below. We hope to see you there! https://urmc.zoom.us/j/94951145062

We have some exciting news. The University of Rochester has been designated as an Intellectual and Developmental Disabilities Research Center by the National Institute of Child Health and Human Development! The center will be co-led by URBC director, Dr. Jonathan Mink, and URMC Del Monte Institute for Neuroscience director, Dr. John Foxe. Other URBC researchers including Drs. Erika Augustine, Heather Adams and Amy Vierhile will also have important roles in the center. More information on what this means and how it will help with future research can be found below! https://www.urmc.rochester.edu//urmc-tapped-to-advance-res

It is not too late to schedule your virtual research visit! The URBC is hosting a virtual research week from July 6th-9th to allow families to participate in URBC research. At your visit, we will conduct rating scales, cognitive testing and questionnaires. The visit should take 45-60 minutes. For more information or to schedule a visit, contact us by phone (585) 275-4762 or by email at [email protected].

The URBC is hosting a Virtual Research Week! This will occur the week of the annual BDSRA meeting. All visits will be completed using a secure video conferencing software called Zoom. During these visits, we will complete rating scales, cognitive testing and questionnaires. The visit should take 45-60 minutes. Please call us at (585) 275-4762 or email us at [email protected] for more information! . . . .... . Image: Zain Nabi. https://www.topuniversities.com//how-do-research-project-6. See more

Are you interested in participating in NCL research? From July 6th-9th the URBC will be hosting a Virtual Research Week during which you and your family can participate in URBC research activities from your own home. Study activities will include rating scales, cognitive testing and questionnaires. To learn more or schedule a visit, contact us by phone (585) 275-4762 or by email at [email protected].