This application is in response to PAR-06-420 entitled: Brain Disorders in the Developing World: Research Across the Lifespan (R21). We propose to implement a pilot project in one urban and one rural community in Uganda for surveillance of moderate to severe neuro- developmental disabilities (NDDs) in 2-9 year old children. The disabilities to be investigated will include autistic spectrum disorders (ASD), cerebral palsy (CP), epilepsy, mental retardation (MR), speech and language disorders, visual impairment, and hearing impairment. We will conduct door-to-door screening using an expanded version of a screening tool designed for use in developing countries (Ten Questions or TQ) and adapted for use in Uganda. Children who screen positive and a sample of those who screen negative will be invited to participate in a comprehensive diagnostic assessment and obtain recommendations on feasible interventions, if indicated. Results of the screening and the diagnostic assessments will be statistically compared to establish the validity of the screening tool. Preliminary data obtained from the pilot study will be tabulated to estimate prevalence and provide basic demographic description of the children. We will evaluate the feasibility of future expansion of NDDs surveillance to other areas of Uganda and determine the infrastructure requirements for future expansion. With the goal of increasing clinical and research capacity in Uganda, we will also conduct a needs assessment of training requirements and strengthen and enhance a network of Ugandan and international clinicians and epidemiologists to share information and resources. These activities will be conducted in consultation with a Technical Advisory Group (TAG) convened for this project.

Public Health Relevance

Neuro-developmental disorders (NDDs) typically result in lifelong disability, often severe, and pose a substantial threat to global public health. Current estimates are that 90% or more of children and families affected by NDDs are in developing countries, but over 90% of resources devoted to research, preventive efforts, and services are expended for children and families in wealthier developed countries. Professionals and planners are urged to assess the burden caused by these disorders and to take appropriate action (WHO 2006). This proposal to develop a NDDs surveillance system for children 2-9 years of age in Uganda responds to this challenge. The surveillance system will generate data for service and prevention planning, policy directives, and advocacy. ? ? ?

National Institute of Health (NIH)
Fogarty International Center (FIC)
Exploratory/Developmental Grants (R21)
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Special Emphasis Panel (ZRG1-ICP2-B (50))
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Michels, Kathleen M
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Sequoia Foundation
La Jolla
United States
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Kakooza-Mwesige, Angelina; Ssebyala, Keron; Karamagi, Charles et al. (2014) Adaptation of the ""ten questions"" to screen for autism and other neurodevelopmental disorders in Uganda. Autism 18:447-57