LAUSR

As a child neurologist (SSJ) and developmental cognitive neuroscientist (CAN), we care for and study individuals across a wide developmental, age, and ability spectrum. Over the years, as we have engaged with and learned from families of individuals with a variety of neurodevelopmental disorders, including intellectual and developmental disabilities (IDDs), we have been struck by the impact of the rapid advances that have been made in the field over the last several decades. Parents of adults with IDD often report that years ago, when they were first concerned about their child’s development (i.e., due to motor delays, early seizures, or failure to gain language) few, if any educational, medical, or therapeutic resources were available for their children. Many were told by their health care provider not to worry because their child would “eventually catch up,” while others were instructed to just “watch and wait, because [boys] develop more slowly.” Those who eventually received a genetic diagnosis, usually in late childhood, received little to no concrete information about the functional significance (including treatment options) of the genetic variant or mutation, thus perpetuating continued uncertainty and fear about their child’s future. In contrast, parents with recently diagnosed infants and children often share stories of hope and empowerment, with early detection of developmental delays facilitating prompt intervention and genetic testing which, in turn, leads to improved clinical monitoring and prognostication, engagement with patient advocacy groups, and new opportunities for entry into patient registries, natural history studies, and clinical trials. Improved screening, clinical care, treatment, and advocacy for individuals with IDDs result directly from decades of collaborative, multidisciplinary research that was first formally supported through the Mental Retardation Facilities and Community Health Centers Construction Act (Public Law 88-164). Signed into law by John F. Kennedy in 1963, this Act drastically altered the delivery of health and education services to those with IDDs. Prior to this legislation, individuals with intellectual disability or other neurodevelopmental disorders were institutionalized or hospitalized rather than rehabilitated and integrated. This Act began a system of special education and community service programs for children and adults with IDDs. It also provided critical funding to establish national research centers, now known as the Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers (IDDRCs). For more than 50 years, these centers, funded by the Eunice Kennedy Shriver National Institute of Child Health and Development (NICHD), have catalyzed multidisciplinary research in IDDs, from molecular biology, developmental neuroscience, and neurogenetics to clinical studies focused on developmentally informed assessment and treatment of individuals with IDDs. Each center contains core facilities and projects that support research in IDDs and that train the next generation of both basic and clinical investigators. While the clinical and/or scientific cores vary across sites, including areas such as molecular genetics, bioinformatics, cellular imaging, and preclinical models, every IDDRC is required to include a clinical translational core to promote patient-centered research. Unified by the theme of Developmental Cognitive Neuroscience, this special issue of the Journal of Neurodevelopmental Disorders celebrates the breadth, innovation, collaboration, and creativity of these centers, with * Correspondence: [email protected] Psychiatry, Neurology, Pediatrics, UCLA David Geffen School of Medicine, UCLA Center for Autism Research and Treatment, Los Angeles, USA Full list of author information is available at the end of the article