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

Launched by INSTITUT NATIONAL DE LA SANTÉ ET DE LA RECHERCHE MÉDICALE, FRANCE · Mar 6, 2025

Keywords

ClinConnect Summary

The RaDiCo-GenIDA clinical trial is an important research study focused on understanding the genetic factors that contribute to intellectual disabilities and autism spectrum disorders (ASD). The main goal of this study is to create an online database where families can help provide information about their loved ones who have known genetic causes for these conditions. By filling out easy-to-understand questionnaires, families will share details that can help doctors better manage the health of individuals with intellectual disabilities and ASD. This information will allow researchers to group patients with similar genetic mutations, which could improve our understanding of these conditions and lead to more personalized medical care.

To participate in this study, you must be an adult (18 years or older) or a family member of someone who has a known genetic cause for their intellectual disability or ASD. It's important that you understand the genetic background of the condition. Participants will complete online questionnaires from the comfort of their homes, and there are no restrictions based on age, gender, or other health conditions. However, individuals with intellectual disabilities or ASD that do not have a known genetic cause are not eligible to join. This study aims to make a significant impact on how we understand and treat these conditions, ultimately benefiting the affected individuals and their families.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Be a voluntary adult (aged 18 or older)
• • Be a family member (i.e., mother/father) of patients with intellectual disabilities and/or autism spectrum disorders of known genetic origin. This includes monogenic causes as well as recurrent copy number variations (CNVs) such as deletions or duplications. Note: we also allow adult patients to participate directly if they wish and have the capacity to do so.
• • Have knowledge of the genetic cause behind intellectual disabilities or autism spectrum disorders. An exception to this rule is possible for patients with a syndrome that includes intellectual disabilities or autism spectrum disorders, and for whom genetic investigation is considered, with the approval of the project's scientific council (which will define the syndromes eligible for this exception).
• • Have the intellectual and material capabilities to complete an internet questionnaire.
• • Have read the information sheet regarding the study and agreed to the general conditions of participation in the study.
• • There are no restrictions based on age, gender, or potential comorbidities of the individual themselves.
• Exclusion Criteria:
• • Patients affected by the presence of intellectual disability and/or an autism spectrum disorder of unknown genetic origin will not be able to participate in the study, except with the exception mentioned in the previous chapter.
• • It is requested that only adults enter data. However, the collected data may pertain to a minor (in the case of a parent entering data about their minor child)