TY - JOUR
T1 - A Collaborative Model for Research
T2 - Neurodevelopmental Effects of HIV-1 in Children and Adolescents with Hemophilia as an Example
AU - Stehbens, James A.
AU - Loveland, Katherine A.
AU - Bordeaux, Janice D.
AU - Contant, Charles
AU - Schiller, Marilyn
AU - Scott, Anthony
AU - Moylan, Patricia M.
AU - Maeder, Margaret
N1 - Funding Information:
The Hemophilia Growth and Development Study is funded by the following: the National Institutes of Health, the National Institute of Child Health and Human Development (A. Willoughby, MD, MPH); the Bureau of Maternal and Child Health and Resources Development (W. Kessel, MD, MPH); the Centers for Disease Control and Prevention (B. Evatt, MD); the National Cancer Institute (S. O'Brien, PhD; C. Winkler, PhD; and D. Mann, MD); and the National Institute of Mental Health (W. Pequegnat, PhD). The following individuals are the Center Directors, Study Coordinators, or Committee Chairs of the study: E. Gomperts, MD; F. Kaufman, MD; M. Nelson, MD; and S. Pearson, RN (Childrens Hospital, Los Angeles); M. Hilgartner, MD; S. Cunningham-Rundles, PhD; J. Gertner, MD; and I. Goldberg, RN (The New York Hospital-Cornell Medical Center); W. K. Hoots, MD; K. Loveland, PhD; M. Cantini, RN; and G. Casterline, RN, MSN (University of Texas Medical School, Houston); A. Willoughby, MD, MPH (The National Institutes of Health, National Institute of Child Health and Human Development, Bethesda, MD); S. Donfield, PhD, and M. A. Maeder, MHS (New England Research Institute, Inc. [Data Coordinating Center]); C. Contant, Jr., PhD (Baylor College of Medicine); C. T. Kisker, MD; J. Stehbens, PhD; J. Bale, MD; and V. Cool, PhD (University of IowaHospitals and Clinics); P. Sirois, PhD (Tulane University); C. Sexauer, MD; H. Huszti, PhD; S. Hawk, PA-C; and F. Kiplinger (Childrens Hospital of Oklahoma); S. Arkin, MD, and A. Forster, RN (Mount Sinai Medical Center); S. Swindells, MD, and S. Richard (University of Nebraska Medical Center); J. Mangos, MD; A. Scott, PhD; and L. Hoel, RN (University of Texas Health Science Center at San Antonio); J. Lusher, MD; I. Wanier, MD; and K. Baird-Cox, RN (Childrens Hospital of Michigan); M. E. Eyster, MD; E.
Funding Information:
This research was supported by the Bureau of Maternal and Child Health and Resources Development (Grant MCJ-060570), the National Institute of Child Health and Human Development (Grant N01-HD-4-3200), the Centers for Disease Control and Prevention, the Laboratory of Viral Carcinogenesis of the National Cancer Institute, and the National Institute of Mental Health. Additional support was provided by grants from the National Center for Research Resources of the National Institutes of Health to the New York Hospital-Cornell Medical Center Clinical Research Center (M01-RR06020); the Mount Sinai General Clinical Research Center, New York (M01-RR00071); the University of Iowa Clinical Research Center (M01-RR00059); and the University of Texas Health Science Center, Houston (M01-RR02558).
PY - 1997
Y1 - 1997
N2 - 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.
AB - 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.
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U2 - 10.1207/s15326888chc2602_5
DO - 10.1207/s15326888chc2602_5
M3 - Article
AN - SCOPUS:0000410289
VL - 26
SP - 115
EP - 135
JO - Children's Health Care
JF - Children's Health Care
SN - 0273-9615
IS - 2
ER -