InterRett is the first-ever project collecting data on a worldwide basis about Rett syndrome.

Funded by the International Rett Syndrome Association, this international online database examines the clinical features and genetic characteristics of Rett syndrome. InterRett is playing an invaluable role in:

• Development of partnerships between families and clinicians and in advancing knowledge about Rett syndrome
• Increasing the clinical understanding of Rett syndrome
• Providing a new way to help families affected by the disorder, health professionals and the general public learn about Rett syndrome
• Encouraging collaboration with researchers from around the world

Why InterRett is so special

For rare disorders such as Rett syndrome, the Internet provides access to a worldwide population, providing higher statistical power than individual centers or even country based research studies. The Internet also provides an ideal medium to disseminate high quality information about a specific disorder to the medical and general community.

Privacy

All data are de-identified (are assigned unique codes) to protect the privacy of participating families. To maintain the validity of the data all families and clinicians must register and receive login details before submitting data.

InterRett is managed and coordinated from the Australian Rett Syndrome Study at the Telethon Institute for Child Health Research (Perth, Western Australia) by Dr Helen Leonard, Professor Sue Fyfe (Curtin University) and Professor Nick de Klerk. Development of the project is guided by an International Reference Panel comprising family members, clinicians, therapists and researchers from all over the world.