Guidelines for clinical practice in Rett syndrome
We have recently developed recommendations to support clinical practice for gastro-intestinal disorders including growth and scoliosis in Rett syndrome. We used the Delphi technique to develop the recommendations by working with expert panels of clinicians and researchers who were both multi-disciplinary and international. Whilst not a recipe, the recommendations provide a summary of key points and principles for management in relation to Rett syndrome.
You can download summaries of the recommendations including booklets for families and leaflets for clinicians.
Guidelines for gastrointestinal issues:
- Growth and Nutrition Booklet
- Guidelines for Growth and Nutrition
- Guidelines for Gastrointestinal Issues
Translations:
- Český Překlad (Czech) Zlepšování Zdravotního Stavu Dívek S RettovýM Syndromem Informační Příručka Pro Rodiny A Pečovatele Správná Výživa A Trávení
Guidelines for scoliosis:
Guidelines for Scoliosis Booklet
Translations:
- Traduction Française (French) La Scoliose dans le Syndrome de Rett
- Traducción Española (Spanish) Escoliosis en el Síndrome de Rett
- Český Překlad (Czech) Skolióza U Rettova Syndromu
- Magyar Fordítás (Hungarian) Gerincferdülés A Rett-Szindrómában
Reports
The AussieRett study has published two reports, an inaugural one in 2002 and a follow-up one in 2006.
Books
A Story about Paris: Living with Rett Syndrome
Perth Mother Jessica wrote a book to help Paris' classmates at school understand something about Rett syndrome. It has been written in language suitable for children and young people. You may be interested in having a copy for your own family members to use, especially your other children, when explaining about your daughter's condition.
It would also be a useful addition to school libraries and may be helpful to health professionals.
The book can be purchased from The Kids for Child Health Research for $10.00 including postage.
To purchase please contact us:
email: aussierett@telethonkids.org.au
phone: (08) 9489 7790/7774 fax: (08) 9489 7700
