A Collaborative Model for Research: Neurodevelopmental Effects of HIV-1 in Children and Adolescents With Hemophilia as an Example

Abstract

In this article we describe a model developed for a longitudinal neuropsychological investigation of pediatric hemophilia patients. The model could be applied to study the neurobehavioral outcomes of other chronic childhood disorders to allow for comparison among illness and disease groups. The primary psychology research questions in this study concern the effects of hemophilia and HIV-1-the AIDS virus--on the development of children with hemophilia in 9 areas of psychological functioning. We present data regarding type and severity of hemophilia, socioeconomic status, developmental and educational history, and immune functioning at enrollment. We briefly review baseline neuropsychological data in relation to the demographic, educational, and medical history data, and we discuss the advantages and disadvantages of multisite collaborative longitudinal studies as well. Finally, we discuss the potential for this study to advance knowledge regarding the effects of both hemophilia and HIV-1 on the developing child.