A COLLABORATIVE MODEL FOR RESEARCH - NEURODEVELOPMENTAL EFFECTS OF HIV-1 IN CHILDREN AND ADOLESCENTS WITH HEMOPHILIA AS AN EXAMPLE

In this article we describe a model developed for a longitudinal neuro psychological investigation of pediatric hemophilia patients. The mode l could be applied to study the neurobehavioral outcomes of other chro nic childhood disorders to allow for comparison among illness and dise ase groups. The primary psychology research questions in this study co ncern the effects of hemophilia and HIV-1-the AIDS virus-on the develo pment of children with hemophilia in 9 areas of psychological function ing. We present data regarding type and severity of hemophilia, socioe conomic status, developmental and educational history, and immune func tioning at enrollment. We briefly review baseline neuropsychological d ata in relation to the demographic, educational, and medical history d ata, and we discuss the advantages and disadvantages of multisite coll aborative longitudinal studies as well. Finally, we discuss the potent ial for this study to advance knowledge regarding the effects of both hemophilia and HIV-1 on the developing child.