GenIDA: an international participatory database to gain knowledge on health issues related to genetic forms of neurodevelopmental disorders

The GenIDA project is an international database designed to better understand rare genetic disorders affecting a person’s development and behavior. Through the active participation of families and caregivers, valuable information is gathered about various conditions such as intellectual disabilities and autism. This initiative aims to build a comprehensive picture of these disorders, leading to improved care and support for affected individuals and their families. By involving families directly in the research, GenIDA empowers them to contribute their unique insights, enriching our understanding of these complex conditions. The database has already collected data from over 1545 patients globally, shedding light on various genetic factors influencing these disorders. This collaborative effort is helping researchers and healthcare professionals worldwide to make significant strides in the treatment and management of these rare genetic conditions.