InterRett & RettBase


 

InterRett

 

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

Funded by Rettsyndrome.org, 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. Development of the project is guided by an International Reference Panel comprising family members, clinicians, therapists and researchers from all over the world.

 

 

RettBase      

This database has been constructed by merging mutation and polymorphism data from the published literature pertaining to Rett syndrome and related clinical disorders, and by incorporating unpublished mutation and polymorphism data that have been submitted directly to us. Information can only be submitted by clinicians or the testing labs. Please encourage your child's doctor to contribute to this database by completing the MECP2 Mutation Data Form.

RettBASE is curated by: Prof. John Christodoulou. The MECP2 database and website are maintained by the Western Sydney Genetics Program.