Function and Quality of Life in Juvenile Neuronal Ceroid Lipofuscinosis
The University of Rochester Medical Center is currently recruiting parents of individuals with genetically confirmed (CLN3) Juvenile Neuronal Ceroid Lipofuscinosis (JNCL) for a research study. The purpose of this study is to learn how to measure changes in function and quality of life of people with JNCL, using parent questionnaires. The study will ask questions about your child’s quality of life, physical, mental, and social health. The study will last a minimum of 18 months and up to 24 months. It involves completing a series of four online surveys once every six months. You must be a parent of an individual with genetically confirmed JNCL, able to speak English, and have access to a computer, internet and a current email address. You will be paid with a $25 gift card for each complete set of questionnaires, up to $125 for completion of 5 assessments over 24 months. There will be no cost to you to participate in this study.
To learn more about this study, you can click the following link:
https://redcap.urmc.rochester.edu/redcap/surveys/ and enter the code: WEJTCHE8P. This link will also allow you to enroll in the study if you choose to participate. If you have questions about the study, please contact Sara Defendorf (Study Coordinator) or Dr. Erika Augustine (Principal Investigator) at (585) 273-3810 or by email at Batten@urmc.rochester.edu.
Information about the University of Rochester Batten Disease Diagnostic and Clinical Research Center can be found at the following site: http://www.urmc.rochester.edu/neurology/batten-disease-center/
