Improving the consent process for neuroepidemiologic research in resource-poor settings.

Meta, Judith; Nasuwa, Fortunata; Mwendo, Emanuel; Reyburn, Hugh; Bower, James H · Neurology · 2014

expert_opinion · Level V

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Abstract

Participation rates in epidemiologic studies in African communities are historically high. We recently performed a pilot prevalence study for neurologic morbidity in Mungushi, Tanzania, where the participation rate was 645/657 subjects (98.2%).<sup>1</sup> We questioned whether this high rate was due to a sincere motivation to participate or a fear of refusal of participation. As Western investigators are increasingly performing neuroepidemiologic work in Africa, it is imperative to distinguish between the 2 explanations. Investigators need to tailor the consent process to the local community's needs, and be sensitive to the motivation of the participants whose culture may differ from their own.

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