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        Updating the profile of C-terminal MECP2 deletions

        Article title Bebbington, A, Percy, A, Christodoulou, J, Ravine, D, Ho, G, Jacoby, P, Anderson, A, Pineda, M, Ben Zeev, B, Bahi-Buisson, N, Smeets, E ...

        Linking MECP2 and pain sensitivity

        Article title Downs, J, Geranton, SM, Bebbington, A, Jacoby, P, Bahi-Buisson, N, Ravine, D & Leonard, H 2010, 'Linking MECP2 and pain sensitivity: ...

        Survival with Rett syndrome

        Article title Freilinger, M, Bebbington, A, Lanator, I, Klerk, ND, Dunkler, D, Seidl, R, Leonard, H & Ronen, GM 2010. Survival with Rett syndrome: ...

        Stereotypical hand movements

        Article title Carter P, Downs J, Bebbington A, Williams S, Jacoby P, Kaufmann WE, Leonard H. Stereotypical hand movements in 144 subjects with Rett ...

        Clinical guidelines for management of bone health in Rett syndrome based on expert consensus and available evidence

        Article title Jefferson A, Leonard H, Siafarikas A, Woodhead H, Fyfe S, Ward LM, et al. (2016) Clinical Guidelines for Management of Bone Health in ...

        Research

        Adapting a measure of gross motor skills for individuals with CDKL5 deficiency disorder: A psychometric study

        Validated measures capable of demonstrating meaningful interventional change in the CDKL5 deficiency disorder (CDD) are lacking. The study objective was to modify the Rett Syndrome Gross Motor Scale (RSGMS) and evaluate its psychometric properties for individuals with CDD. ...

        Rare Diseases

        While individual diseases are rare, as a group, rare diseases are common. Recent estimates suggest that between 3% and 6% of the world’s population are affected by rare disease. ...

        Research

        Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome

        Gastrostomy placement was associated with improvement in BMI in females with Rett syndrome, but its long-term impact on individuals and their families is unclear ...

        Research

        Sleep disturbances in Rett syndrome: Impact and management including use of sleep hygiene practices

        Attention to sleep hygiene remains an important management strategy for sleep problems in Rett syndrome ...

        Research

        Oral health experiences of individuals with Rett syndrome: A retrospective study

        Social advantage may provide some protection for dental health in individuals with Rett syndrome ...

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