HEIRS

这个子项目是利用由NIH/NCRR资助的中心拨款提供的资源的许多研究子项目之一。子项目和调查员(PI)可能从另一个NIH来源获得了主要资金，因此可能会出现在其他CRISE条目中。列出的机构是针对中心的，而不一定是针对调查员的机构。该项目的目的是确定华盛顿特区地区非裔美国人和西班牙裔人口中初级铁超载的流行率，这是美国国家卫生研究院为期5年的全国铁超载筛查计划的一部分。这项研究的主要假设是，非HFE原生铁超载存在于非裔美国人人口中。第一年将专门用于规划、协议开发和试点测试。在第二年和第三年，将进行一项初步筛查计划，通过测定20000名受试者的转铁蛋白饱和度和血清铁蛋白浓度。大约16,000名非洲裔美国人和4,000名西班牙裔患者将在霍华德大学医院和其他机构的初级保健设施进行筛查。转铁蛋白饱和度和/或血清铁蛋白浓度超过97.5百分位数的受试者(预计约占总数的4.9%或980名受试者)将接受随访，重复测定转铁蛋白饱和度和血清铁蛋白浓度。在第二年、第三年和第四年期间，有确诊升高的受试者(预计约占重复测定受试者的20%或大约198人)将接受全面的临床检查。预计在接受全面检查的受试者中，约有一半(100人)将被发现原发铁超载，并将在第三年和第四年对这些受试者的大约400名亲属进行家庭研究。在研究的第二到第五年，将对患有原发铁超载的受试者进行随访，以了解发病率和死亡率。伦理、法律和社会问题(ELSI)的评估将在整个研究计划中进行。

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. The purpose of the project is to determine the prevalence of primary iron overload in the African-American and Hispanic population of the Washington, D.C. area as part of a 5-year nationwide iron overload screening program b the National Institutes of Health. The primary hypothesis of the study is that non-HFE primary iron overload exists in the African American population. Year 1 will be devoted to planning, protocol development and pilot testing. In Years 2 and 3, an intial screening program, by determining the transferrin saturation and serum ferritin concentration in 20,000 subjects, will be conducted. Approximately 16,000 African American and 4,000 Hispanic patients will be screened at primary care facilities of Howard University Hospital and other institutions. Subjects with transferrin saturation and/or serum ferritin concentration above the 97.5 percentile (projected to be about 4.9% of the total or 980 subjects) will be followed up with a repeat determination of transferrin saturation and serum ferritin concentration. Subjects with confirmed elevations (projected to be about 20% of the subjects having repeat determinations or about 198 individuals) will undergo comprehensive clinical examinations during Years 2, 3 and 4. It is projected that primary iron overload will be found in about one-half (100) of the subjects undergoing comprehensive examination, and family studies will be performed on approximately 400 relatives of these subjects during Years 3 and 4. Subjects with primary iron overload will be followed during Years 2 to 5 of the study, with regards to morbidity and mortality. Assessments of Ethical, Legal and Social Issues (ELSI) will be done throughout the research program.