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

Publikation: Bidrag til tidsskrift/Konferencebidrag i tidsskrift /Bidrag til avisTidsskriftartikelForskningpeer review

  • Peter B Marschik, c BEE - PRI, Brain, Ears & Eyes Pattern Recognition Initiative , BioTechMed - Graz , Austria.
  • ,
  • Sanne Lemcke
  • Christa Einspieler, a Institute of Physiology, Research Unit iDN - Interdisciplinary Developmental Neuroscience, Medical University of Graz , Graz , Austria.
  • ,
  • Dajie Zhang, a Institute of Physiology, Research Unit iDN - Interdisciplinary Developmental Neuroscience, Medical University of Graz , Graz , Austria.
  • ,
  • Sven Bölte, g Child and Adolescent Psychiatry , Center for Psychiatry Research, Stockholm County Council , Stockholm , Sweden.
  • ,
  • Gillian S Townend, e Rett Expertise Centre Netherlands - GKC , Maastricht University Medical Centre , Maastricht , The Netherlands.
  • ,
  • Marlene B. Lauritsen, Research Unit for Child & Adolescent Psychiatry, Aalborg University Hospital, Aalborg, Denmark, Danmark

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.

OriginalsprogEngelsk
TidsskriftDevelopmental Neurorehabilitation
Vol/bind21
Nummer1
Sider (fra-til)68-72
Antal sider5
ISSN1751-8423
DOI
StatusUdgivet - 2018

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