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  • To monitor patterns of Rett syndrome occurrence.
  • To develop and maintain an ongoing data collection which will provide information about:
      • the impact of Rett syndrome on functioning, daily living activities and health;
      • the relationship between genetic and clinical characteristics;
      • the adequacy, availability and quality of treatments and services provided;
      • the use of medical and therapeutic interventions;
      • the impact of Rett syndrome on families in terms of family functioning and support, and financial costs and resources.
  • To provide a population data source for genetic research which is a model for use elsewhere in the world.
  • To share information with medical, educational and health professionals to increase understanding about Rett syndrome.
  • To make available information which can be provided to families of newly diagnosed children to give them some expectations about their child's future.
Telethon Kids Institute