Rett Syndrome Patient Database
In 2021, in collaboration with the certified NPO “Japan Rett Syndrome Support Organization”, we created an application called Rett’s Communication.
It is an attempt to collect data on Rett patients from all over Japan, and accumulate knowledge in the application.
The Japan Rett Syndrome Association has many preschoolers and people in their 30s and 40s.
On the other hand, most of the members of the Rett Syndrome Support Organization are elementary school students or younger. We would like to increase the value of data by bringing data from members of both organizations!
It was a long time ago, but in 2001, when we invited a scoliosis doctor to the Takato Children’s Nature Camp and had 30 Rett patients attend, 70% of them had symptoms of scoliosis. turned out to be out. The actual percentage may be higher as the statistics are for those who were able to attend the camp. In this way, we believe that the more patients who participate, such as how many are able to walk and how many are using gastrostomy catheters, the more useful they will be for future treatment.
In addition, five members of the Japan Rett Syndrome Association have passed away till now , and we have been donned to report the main causes in the questionnaire. Collecting such data is also important in order to tackle the long-term issue of treating Rett patients. So, first of all, thank you for registering for the Rett’s Communication application.
■Registration to Rett’s Communication Application
・iOS users
Please download the application from here.
・Android users
Please download the application from here.
Please download the application from here.
* For details on the application registration flow, please refer to this (link: PDF).