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The SWF Center of Excellence At Detroit Children's Hospital |
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The SWF Center of Excellence at Detroit Children's Hospital PET Center has been making some very insightful findings in their longitudinal study on neuroimaging markers of disease progression during the clinical course of Sturge-Weber syndrome.
To date, thanks to participants thus far they have found that brain imaging with advanced MRI techniques combined with positron emission tomography (PET) of brain glucose metabolism is able to detect the extent of early brain involvement in young affected children. Children with brain metabolic abnormalities (seen by PET) extending far beyond apparent structural changes (seen by conventional MRI) in their brain are at risk for subsequent progression. The investigators are also studying a number of imaging markers that highly correlate with seizures and the cognitive development of the children. The obtained imaging and clinical data (including the results of a detailed neuro-psychology testing) may instruct families and physicians about the extent and severity of the disease, as well as potential progression that may prompt more aggressive treatment approaches such as resective surgery.
The SWF COE is continuing to enroll children, as young as possible (over 6 months of age, with unilateral brain involvement) to participate in this crucial study. The imaging and clinical tests as well as clinical consultation are all free of charge, and the study funding is used to reimburse travel costs including airfare and hotel charges after completion of the visit. This is a longitudinal study and enrolled patients and families are requested to return for a follow-up visit 1 or 2 years after the initial visit to repeat the tests and assess if any interval progression occurred. For further information, please contact the principal investigator, Dr. Juhasz (office phone: 313-966-5136; email:
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). One family, who completed the longitudinal study recently, had this to say about their experience in Detroit: "We thoroughly enjoyed our time with you all in Detroit. You have a wonderful staff. Thank you for allowing us to participate. I have never participated in anything like this before but the wealth of information that it supplied us with over the last few years has been worth all the time and effort put forth."
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