The GenIDA project was initiated in 2014 by Prof. Jean-Louis Mandel at the Institute of Genetics and Molecular and Cellular Biology of Strasbourg (IGBMC). Its main objective is to collect and analyze longitudinal medical information on intellectual disabilities (ID) and autism spectrum disorders (ASD) of genetic origin.
A website has been created allowing the direct participation of parents (or relatives) of patients. They can now create an account and answer an easy-to-understand multiple-choice quiz as well as some "open" questions about the main issues affecting the health of the person affected and the quality of life. Individual data is anonymised and stored on secure servers.
The project also aims to enable health professionals and families of patients to access statistical results gene by gene (or CNV) whose gene that interests us here most MED13L.
If you have not done so yet, create your account and fill out the questionnaire: