HGDS Neuropsychological 3 Dataset in Hemophilia Growth and Development Study

Data on neuropsychological parent reports at Baseline and Cycles 1-8
Study Description
A multicenter study of hemophilia and its complications, HGDS was established in 1988. Data were prospectively collected in 14 US hemophilia treatment centers through 1996/97. The HGDS investigated the effects of hemophilia and HIV on physical growth and maturation; immunological, neurological, and neuropsychological functioning; and the pathophysiology of HIV and hepatitis C. Research using the clinical data and stored samples continues and includes the genetic research that paved the way for development of the protease inhibitors currently used to treat HIV; studies that provided clues to viral characteristics of HIV and hepatitis B and C; research to identify genetic factors associated with the development of inhibitory antibodies to factor VIII; the relationship of inhibitors to cognitive development and academic achievement; studies of viral factors and how they relate to progression of HIV and hepatitis C; and research on the parenteral transmission of human viruses. Biospecimens are available. Children and adolescents ages 6 to 19 with hemophilia (n=333), with and without HIV infection, and a subset of their unaffected male siblings (n=47)

基线及第1至8周期的父母报告神经心理学数据

研究概况
针对血友病及其并发症的多中心研究HGDS于1988年启动。研究数据于1996至1997年间在美国14家血友病治疗中心完成前瞻性收集。HGDS旨在探究血友病与人类免疫缺陷病毒（Human Immunodeficiency Virus）对个体生理生长与发育、免疫功能、神经功能及神经心理学功能的影响，以及人类免疫缺陷病毒与丙型肝炎（Hepatitis C）的病理生理学机制。
依托该研究的临床数据与留存样本开展的后续研究仍在持续进行，涵盖为当前临床治疗人类免疫缺陷病毒感染的蛋白酶抑制剂研发奠定基础的遗传学研究；揭示人类免疫缺陷病毒、乙型肝炎（Hepatitis B）及丙型肝炎病毒特征的相关研究；明确与第八凝血因子（Factor VIII）抑制性抗体产生相关的遗传因素的研究；抑制性抗体与认知发育及学业成就间关联的研究；探究病毒因子及其与人类免疫缺陷病毒和丙型肝炎病情进展关联的研究，以及人类病毒肠外传播相关研究。本研究留存有生物样本。
研究对象包括6至19岁的血友病患儿及青少年（共333例），其中部分合并人类免疫缺陷病毒感染，同时纳入其未受感染的男性同胞亚组（共47例）。