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Collaborating for Care: Cook Children’s joins Sturge-Weber Syndrome Clinical Care Network

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Sturge-Weber syndrome (SWS) is a rare and sporadic neurocutaneous disorder that classically includes facial port-wine stain in the distribution of the trigeminal nerve and abnormal blood vessels in the brain (leptomeningeal angiomatosis). Occurring in 1 per 20,000-50,000 people, patients with this condition often have multisystem involvement, including epilepsy, stroke-like episodes, weakness, visual problems (glaucoma, vision loss), dental and endocrine abnormalities. The diagnosis and management of such a rare disorder requires a multidisciplinary team dedicated and experienced in the care of this condition. Improving the care and outcome of children with SWS requires research, which is best carried out through multi-center collaboration to allow adequate patient populations for study. With this in mind, Cook Children’s Jane and John Justin Neurosciences Center recently joined 25 other centers in the U.S. as part of the Sturge-Weber Foundation Clinical Care Network. The clinic, led by M. Scott Perry, M.D., provides comprehensive care through collaborative evaluation, management and individualized treatment plans for each patient. In addition, as part of the collaborative network, our team will help develop guidelines for the evaluation and management of SWS. The ultimate goal is to improve outcomes through better understanding and treatment of its many comorbid conditions.

Information on Sturge-Weber syndrome: