Twenty years of surveillance in Rett syndrome: what does this tell us?

QR Code

Twenty years of surveillance in Rett syndrome: what does this tell us?

Background: The clinical characteristics of children diagnosed with Rett syndrome are well described. Survival and how these characteristics persist or change in adulthood are less well documented. This study aimed to describe overall survival and adult health in those with Rett syndrome .Methods: U...

Full description

Bibliographic Details
Main Authors:	Anderson, A., Wong, K., Jacoby, P., Downs, Jennepher, Leonard, H.
Format:	Journal Article
Published:	BioMed Central Ltd. 2014
Subjects:	adulthood survivial Rett syndrome wellbeing ageing longevity women
Online Access:	http://hdl.handle.net/20.500.11937/31158

Similar Items

A preliminary study on use of anticonvulsants and risk of fracture in Rett syndrome
by: Jian, Le, et al.
Published: (2007)

Longitudinal hand function in Rett syndrome
by: Downs, Jennepher, et al.
Published: (2011)

Atypical Presentations and Specific Genotypes Are Associated With a Delay in Diagnosis in Females With Rett Syndrome
by: Fehr, S., et al.
Published: (2010)

Early development and regression in Rett Syndrome
by: Lee, J.Y.L., et al.
Published: (2013)

Perspectives on hand function in girls and women with Rett syndrome
by: Downs, Jennepher, et al.
Published: (2014)

Assessment and Management of Nutrition and Growth in Rett Syndrome
by: Leonard, H., et al.
Published: (2013)

Impact of scoliosis surgery on activites of daily living in females with Rett Syndrome
by: Downs, Jennepher, et al.
Published: (2009)

Barriers to diagnosis of a rare neurological disorder in China - Lived experiences of Rett Syndrome families
by: Lim, F., et al.
Published: (2012)

Caring for a child with severe intellectual disability in China: The example of Rett syndrome
by: Lim, Faye, et al.
Published: (2013)

Community Participation for Girls and Women Living with Rett Syndrome
by: Andrews, J., et al.
Published: (2013)

Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome
by: Strugnell, A., et al.
Published: (2019)

p.R270X MECP2 mutation and mortality in Rett syndrome
by: Jian, Le, et al.
Published: (2005)

Seizures in rett syndrom: An overview from a one-year calendar study
by: Jian, Le, et al.
Published: (2007)

The trajectories of sleep disturbances in Rett syndrome
by: Wong, K., et al.
Published: (2015)

The association between age at first calving and survival of first lactation heifers within dairy herds
by: Sherwin, V.E., et al.
Published: (2016)

From epidemiology to real world outcomes for the management of scoliosis in Rett syndrome
by: Downs, Jennepher, et al.
Published: (2016)

Early Determinants of Fractures in Rett Syndrome
by: Downs, Jennepher, et al.
Published: (2008)

Quantitative and qualitative insights into the experiences of children with Rett syndrome and their families
by: Downs, Jennepher, et al.
Published: (2016)

Parental experiences of scoliosis management in Rett syndrome
by: Ager, S., et al.
Published: (2009)

Valproate and the risk of fracture in Rett syndrome
by: Leonard, H., et al.
Published: (2010)

The toll for Charon's boat in the face of longevity risk: An examination of Basis risk in Longevity bonds.
by: Tsikkouris, Antonis
Published: (2007)

Validating the Rett Syndrome Gross Motor Scale
by: Downs, Jennepher, et al.
Published: (2016)

Clinical and biological progress over 50 years in Rett syndrome
by: Leonard, H., et al.
Published: (2017)

The diagnostic odyssey to Rett Syndrome: The experience of an Australian family
by: Knott, M., et al.
Published: (2012)

Longitudinal bone mineral content and density in Rett syndrome and their contributing factors
by: Jefferson, Amanda, et al.
Published: (2015)

Building the repertoire of measures of walking in Rett syndrome
by: Stahlhut, M., et al.
Published: (2017)

Linking MECP2 and Pain Sensitivity : The Example of Rett Syndrome
by: Downs, Jennepher, et al.
Published: (2010)

Family satisfaction following spinal fusion in Rett syndrome
by: Downs, Jennepher, et al.
Published: (2016)

Parental perspectives on the communication abilities of their daughters with Rett syndrome.
by: Urbanowicz, A., et al.
Published: (2016)

Respiratory morbidity in Rett syndrome: an observational study
by: MacKay, J., et al.
Published: (2018)

A qualitative investigation of recovery after femoral fracture in Rett syndrome
by: Horne, T., et al.
Published: (2017)

Trends in diagnosis of Rett Syndrome in Australia
by: Fehr, S., et al.
Published: (2011)

A validation study of a modified Bouchard activity record that extends the concept of 'uptime' to Rett syndrome
by: Lor, L., et al.
Published: (2015)

Use of equipment and respite services and caregiver health among Australian families living with Rett syndrome
by: Urbanowicz, A., et al.
Published: (2011)

An exploration of the use of eye gaze and gestures in females with Rett syndrome
by: Urbanowicz, A., et al.
Published: (2016)

Determinants of sleep problems in children with intellectual disability
by: Gilbertson, M., et al.
Published: (2021)

Initial assessment of the StepWatch Activity Monitor™ to measure walking activity in Rett syndrome
by: Downs, Jennepher, et al.
Published: (2012)

Determinants of quality of life in Rett syndrome: New findings on associations with genotype
by: Mendoza, J., et al.
Published: (2021)

Spinal fusion in girls with Rett syndrome: postoperative recovery and family experiences
by: Marr, C., et al.
Published: (2015)

The sibling experience: Living with Down syndrome or Rett syndrome in the family
by: Glasson, E., et al.
Published: (2016)