Early development in Rett syndrome – the benefits and difficulties of a birth cohort approach

© 2017 Taylor & Francis Purposes: Typically, early (pre-diagnostic) development in individuals later diagnosed with Rett syndrome (RTT) has been investigated retrospectively using parent reports, medical records and analysis of home videos. In recent years, prospective research designs have be...

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Main Authors: Marschik, P., Lemcke, S., Einspieler, C., Zhang, D., Bolte, Sven, Townend, G., Lauritsen, M.
Format: Journal Article
Published: Informa Healthcare 2017
Online Access:http://hdl.handle.net/20.500.11937/63407
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author Marschik, P.
Lemcke, S.
Einspieler, C.
Zhang, D.
Bolte, Sven
Townend, G.
Lauritsen, M.
author_facet Marschik, P.
Lemcke, S.
Einspieler, C.
Zhang, D.
Bolte, Sven
Townend, G.
Lauritsen, M.
author_sort Marschik, P.
building Curtin Institutional Repository
collection Online Access
description © 2017 Taylor & Francis Purposes: Typically, early (pre-diagnostic) development in individuals later diagnosed with Rett syndrome (RTT) has been investigated retrospectively using parent reports, medical records and analysis of home videos. In recent years, prospective research designs have been increasingly applied to the investigation of early development in individuals with late phenotypical onset disorders, for example, autism spectrum disorder. Methods: In this study, data collected by the Danish National Birth Cohort lent itself to prospective exploration of the early development of RTT, in particular early motor-, speech-language, and socio-communicative behaviors, mood, and sleep. Results and Conclusions: Despite limitations, this quasi prospective methodology proved promising. In order to add substantially to the body of knowledge, however, specific questions relating to peculiarites in early development could usefully be added to future cohort studies. As this involves considerable work, it may be more realistic to consider a set of indicators which point to a number of developmental disorders rather than to one.
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institution Curtin University Malaysia
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spelling curtin-20.500.11937-634072018-02-06T07:40:07Z Early development in Rett syndrome – the benefits and difficulties of a birth cohort approach Marschik, P. Lemcke, S. Einspieler, C. Zhang, D. Bolte, Sven Townend, G. Lauritsen, M. © 2017 Taylor & Francis Purposes: Typically, early (pre-diagnostic) development in individuals later diagnosed with Rett syndrome (RTT) has been investigated retrospectively using parent reports, medical records and analysis of home videos. In recent years, prospective research designs have been increasingly applied to the investigation of early development in individuals with late phenotypical onset disorders, for example, autism spectrum disorder. Methods: In this study, data collected by the Danish National Birth Cohort lent itself to prospective exploration of the early development of RTT, in particular early motor-, speech-language, and socio-communicative behaviors, mood, and sleep. Results and Conclusions: Despite limitations, this quasi prospective methodology proved promising. In order to add substantially to the body of knowledge, however, specific questions relating to peculiarites in early development could usefully be added to future cohort studies. As this involves considerable work, it may be more realistic to consider a set of indicators which point to a number of developmental disorders rather than to one. 2017 Journal Article http://hdl.handle.net/20.500.11937/63407 10.1080/17518423.2017.1323970 Informa Healthcare unknown
spellingShingle Marschik, P.
Lemcke, S.
Einspieler, C.
Zhang, D.
Bolte, Sven
Townend, G.
Lauritsen, M.
Early development in Rett syndrome – the benefits and difficulties of a birth cohort approach
title Early development in Rett syndrome – the benefits and difficulties of a birth cohort approach
title_full Early development in Rett syndrome – the benefits and difficulties of a birth cohort approach
title_fullStr Early development in Rett syndrome – the benefits and difficulties of a birth cohort approach
title_full_unstemmed Early development in Rett syndrome – the benefits and difficulties of a birth cohort approach
title_short Early development in Rett syndrome – the benefits and difficulties of a birth cohort approach
title_sort early development in rett syndrome – the benefits and difficulties of a birth cohort approach
url http://hdl.handle.net/20.500.11937/63407