How can clinical ethics guide the management of comorbidities in the child with Rett syndrome?

@article{Downs2016HowCC,
  title={How can clinical ethics guide the management of comorbidities in the child with Rett syndrome?},
  author={Jenny Downs and David Forbes and Michael Byron Johnson and Helen Leonard},
  journal={Journal of paediatrics and child health},
  year={2016},
  volume={52 8},
  pages={809-13}
}
Rett syndrome is a rare disorder caused by a mutation in the MECP2 gene. Those affected generally have severe functional impairments, and medical comorbidities such as scoliosis and poor growth are common. There is a paucity of information on the natural history of many rare disorders and an even greater deficit of evidence to guide best practice. The population-based and longitudinal Australian Rett Syndrome Database established in 1993 has supported investigations of the natural history of… CONTINUE READING