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Reporting of genetic diagnoses in multidisciplinary intellectual disability care2538IntroductionAbout 1-3% of the population is affected with intellectual disability (ID),1which is characterized by substantial limitations in both intellectual functioning and adaptive behavior, originating during the developmental period.2 Due to rapid technological advances, a genetic diagnosis can be identified in up to 50% of individuals with ID, although estimates of the diagnostic yield vary considerably across studies.3,4 Currently, more than 1,500 monogenic causes of ID are known in addition to other causes like copy number variations (CNVs).5 Such genetic neurodevelopmental disorders and neurometabolic disorders often manifest with complex and variable multiorgan comorbidity. As a result, many different healthcare providers (HCPs) are usually involved in multidisciplinary care, including physicians, psychologists, and professional caregivers.Knowing the cause of ID provides information about associated somatic and neuropsychiatric manifestations and may lead to targets for prognosis, screening, prevention, monitoring and treatment.6 Moreover, it may result in increased life expectancy for those affected. Together with improved genetic diagnostics, targeted treatments and disorder-specific care are increasingly available,7,8 allowing for personalized care, which is the implementation of etiology-driven health monitoring and treatments.9 Disorder-specific care is illustrated by anticipatory care planning for individuals with Down syndrome who eventually all show neuropathological changes of Alzheimer’s disease by the age of forty.10 Research has mainly focused on pediatric ID, although a diagnosis may provide benefits for adults too. More knowledge of complex neuropsychiatric manifestations, the greatest burden of most rare genetic neurodevelopmental disorders,11,12 can improve targeted neuropsychological examination, psychoeducation, and behavioral interventions.13,14 Disorderspecific guidelines are increasingly available, providing recommendations for medical, social, psychiatric and behavioral care.15Although a genetic diagnosis may thus provide important benefits for affected individuals and their families, it is unknown to what extent genetic diagnoses, including information on phenotype and management, are integrated into multidisciplinary ID care.Annelieke Muller sHL.indd 253 14-11-2023 09:07