Clinical Trial for Children with Juvenile Neuronal Ceroid Lipofuscinosis

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"The University of Rochester Medical Center is currently recruiting subjects with JNCL for a clinical trial. This research study will focus on evaluating whether an investigational drug is safe and well tolerated in children with JNCL. Mycophenolate mofetil (also known as Cellcept) is a medication that suppresses the immune system. The study is 22 weeks long with a total of 12 study visits. Four visits require travel to University of Rochester Medical Center in Rochester, New York. Four visits will be with your child’s local physician. Four visits will take place by telephone. Travel costs will be covered by the study. Children enrolled in the study will take mycophenolate syrup twice a day, and will have blood drawn at each study visit.

For further information, please contact Amy Vierhile at (585) 275‐4762.

Below is a pdf brochure with more details, for you to download"

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