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In order to increase knowledge of regression as a clue to diagnose Rett syndrome (RTT), we want to investigate if the regression period (RP) is well defined and easy to recognize. Medical records (including questionnaires and interviews) were reviewed concerning the RP in children with clinical Rett syndrome and a MECP2 mutation referred to the nation-wide Centre for Rett syndrome in Denmark in...
Since 2011 persons with Rett syndrome (RTT) in Denmark have had the possibility for life-long multi-disciplinary follow-up at the nation-wide Centre for Rett syndrome. In 2007–2011 a PhD study was performed. We want to describe experiences from the centre focused on clinical follow-up, counselling and inclusion in research projects. Retrospective survey (31 December 2014); parameters: age of patients,...
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