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

Judith Meta; Fortunata Nasuwa; Emanuel Mwendo; Hugh Reyburn; James H Bower; (2014) Improving the consent process for neuroepidemiologic research in resource-poor settings. Neurology, 82 (10). pp. 895-897. ISSN 0028-3878 DOI: 10.1212/WNL.0000000000000184
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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%).1 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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