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Purpose: Patients with Marfan syndrome are at risk for progressive aortic root dilation, which can lead to aortic dissection and death. These patients are monitored closely by echocardiography every 6-12… Click to show full abstract
Purpose: Patients with Marfan syndrome are at risk for progressive aortic root dilation, which can lead to aortic dissection and death. These patients are monitored closely by echocardiography every 6-12 months. Since many Marfan patients live far away from specialized centers, these clinic visits represent a significant burden. We report the design, methodology, and training phase of a pilot intervention to evaluate the feasibility and reliability of tele-clinic visits using parental echocardiograms. Methods: Patients who met the following criteria are enrolled: Inclusion: 1) Marfan Syndrome by revised Ghent criteria; 2) …
Journal Title: Pediatrics
Year Published: 2020
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