Down syndrome (DS) is a complex condition associated with multiple medical, developmental, and behavioral concerns. A prospective, longitudinal clinical database was integrated into a specialty Down Syndrome Program, with the goals of better understanding the incidence, course, and impact of co-occurring medical, neurodevelopmental, and mental…

This paper considers the ethical and practical issues of recruiting for, and administering a quantitative survey with marginalised populations. These issues were identified through a focus group discussion, which consolidated and expanded upon informal conversations held previously by five researchers about their experiences of conducting a…