SUMMARY The Global Burden of Disease (GBD) data of 2017 revealed that worldwide 291.2 million (11.2%) of 2.6 billion children and adolescents were estimated to have one of four developmental disabilities (childhood epilepsy, intellectual disability, and vision loss and hearing loss), which is an increase of more than double since 2004. Sub-Saharan Africa (SSA), along with South Asia, hosts the overwhelming majority (94.5%) of these children. These children, especially in SSA, are severely underrepresented in the relevant literature. The proposed work is intended to contribute to improving the representation of children and youth from SSA in the scientific literature. The overarching objective of this work is to identify and characterize children/youth (aged 3-18) with developmental disabilities (DD) growing up in rural Zambia. The proposed work is structured around three unique SA. SA1 pertains to the ascertainment of a large sample of children/youth with DD and their matched siblings (total n = 4,000). SA2 addresses the characterization of this sample of children to identify and classify the etiology and potential treatment of their DD. SA3 intends to document the services that are currently accessed by children/youth with DD, and to ascertain community perceptions of DD, to advise on what services are available, accessed, or needed. Collectively, SA1-3 will generate a unique multi-level (social context—behavior—brain—genome) dataset presenting a range of manifestations and causal pathways to DD in rural Zambia in particular and in SSA in general.

PROJECT NARRATIVE Developmental disabilities (DD) present a major public health concern, especially in sub-Saharan Africa (SSA), where resources to diagnose and remediate them are severely limited. This proposal is aimed at establishing a large sample of children with DD in Zambia, providing a detailed characterization of the relevant phenotypes, studying the etiology of these diseases, documenting how they are regarded and treated within the community, to generate relevant recommendations for policy makers.