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DOI 10.1590/1980-5764-dn-2024-0280

Медицинская библиотека · Dementia & neuropsychologia · 2025

Inclusive research with individuals with Down syndrome at risk for dementia.

Fonseca Luciana Mascarenhas, Queiroz Ubiratan Tafuri, Queiroz Miron Tafuri, Forlenza Orestes Vicente

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Inclusive research is a relatively new concept that has received attention in recent years as a scientific priority to respond to health disparities and maximize the practical implications of research. This approach involves a partnership between academics and the individuals who are experiencing the problem to be investigated. Despite the high incidence of dementia and asymptomatic Alzheimer's disease in aging individuals with Down syndrome, inclusive research with this population or those with intellectual disability (ID) at risk of dementia is an area that is little approached and not well documented. Here, we describe the evolution of inclusive research on ID and dementia, some of the challenges and benefits of its implementation, and key aspects to consider when planning such studies. There is an urgent need for national and international guidelines to support inclusive research involving this population. Such frameworks should ensure accessibility, ethical rigor, the meaningful participation of co-researchers, ultimately advancing equity and scientific quality in this underrepresented field.

Для цитирования: Fonseca Luciana Mascarenhas, Queiroz Ubiratan Tafuri, Queiroz Miron Tafuri, Forlenza Orestes Vicente. Inclusive research with individuals with Down syndrome at risk for dementia.. Dementia & neuropsychologia. 2025. DOI: 10.1590/1980-5764-dn-2024-0280.
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