Considerations for developing syndrome-informed early interventions for children with neurogenetic conditions.

Abstract

New insights regarding the early emergence of phenotypic patterns of strength and challenge in neurogenetic conditions afford the possibility of personalized, anticipatory intervention approaches. The development of novel 'syndrome-informed' interventions, however, should incorporate principles that will maximize the utility of intervention activities for as many children with a given neurogenetic condition as possible. This review examines several of these dimensions, including the use of community-engaged frameworks to ensure feasibility and acceptability of novel interventions; the development of cross-nationally valid approaches that can be readily translated into other languages and cultural contexts; and the use of adaptive interventions designs that allow for the tailoring of intervention pathways based on key child dimensions. A case example of the use of these principles is presented in the context of EXPO, a novel executive function intervention designed for young children with Down syndrome. Implications for future intervention development are discussed.