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Showing results for "rett"

Approaches to study the lifelong trajectories of children with neurodevelopmental conditions

We argue that population-based studies are critical to overcome the selection bias seen in many clinical samples and to identify true variability wit…

Expanding the clinical picture of the MECP2 Duplication syndrome

Perinatal characteristics, early childhood development and medical co-morbidities in MECP2 Duplication syndrome

The CDKL5 disorder is an independent clinical entity associated with early-onset encephalopathy

The clinical understanding of the CDKL5 disorder remains limited, with most information being derived from small patient groups seen at individual ce…

The Sibling Project

disability; autism spectrum disorders; Down syndrome; Rett syndrome; CDKL5 disorder; MECP2 Duplication syndrome; ... internationally unique populatio…

Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure

Initial evaluation suggests that QI-Disability is a reliable and valid measure of quality of life across the spectrum of intellectual disability

Discover Our Research

Down syndrome or Rett syndrome in the family: Parental reflections on

Severity Assessment in CDKL5 Deficiency Disorder

A severity assessment was rapidly developed with input from multiple stakeholders. Refinement through ongoing validation is required for future clini…

Parental origin of mutations

recurrence risk in Rett syndrome? Background Rett syndrome is associated

The natural history of the MECP2 Duplication disorder: Australian surveillance and plans for development of an international register

were first identified in 1999 as the major cause of Rett syndrome. Six years later micro-duplications involving ... syndrome which had been provided…