Genetic of Intellectual Deficiency and Autism Spectrum Disorders (RaDiCo-GenIDA)

To take part in this study, you need to be an adult (18 years or older). We are mainly looking for a parent (mother or father) of someone who has an intellectual disability or autism spectrum disorder, and for whom the genetic cause of their condition is already known. This includes cases where there's a specific gene change or a known 'copy number variation' – which means a part of a chromosome is either missing or duplicated.

In some cases, if an adult with intellectual disability or autism wishes to and is able to, they can participate directly themselves. The most important thing is that you know what the genetic cause of the condition is. However, there's a small exception: if a person has a known syndrome that typically includes intellectual disabilities or autism, and a genetic test is planned, you might still be able to join if approved by the study's experts.

You also need to be comfortable using the internet to fill out questionnaires. This study is open to people of any age, gender, or with any other health conditions, as long as they meet the main criteria mentioned above. You cannot take part if the genetic cause of the intellectual disability or autism is not yet known (unless you meet that specific exception for a known syndrome where testing is planned).

If you decide to take part in this study, you will be asked to complete online questionnaires. These questionnaires are designed by medical experts but are written in a way that is easy for families to understand. You won't need to visit any clinics or doctors for this study, as all the information will be shared online. There are no medications or treatments involved in this study, as it's purely about collecting information. The study doesn't specify a total duration, but it involves filling out questionnaires at certain times. You will be given more details about the exact schedule if you choose to participate.