COMPREHENSIVE SICKLE CELL CENTER

波士顿镰状细胞中心由五个主要部分组成： (1)（2）研究;（3）测试;（4）教育和 咨询，以及（5）中央数据库和资源文件。 通过 这些组成部分的协调努力，BSCC建议达到其 具体目标如下：1. 赞助和支持该领域的研究 在我中心进行的五（5）个主要的血红蛋白病 波士顿大学医学院（Boston University School of Medicine，Tufts-New） 英格兰医疗中心，儿童医院医疗中心，贝斯以色列 医院和圣伊丽莎白医院; 2. 中心将继续测试 波士顿地区血红蛋白S基因和/或G6 PD“高危”人群 地区，并将扩大服务到其他社区，那里有一个 “危险人口”; 3. 中心将开始测试 β-地中海贫血性状; 4. 它将提供教育和非指导性 为血红蛋白性状变异的个体提供咨询， G6 PD缺陷，并提供咨询，支持和直接的病人服务， 镰状细胞病患者及其家属; 5.它还将 提高对镰状细胞特征知识的认识水平， 通过教育方案在公众中防治镰状细胞病; 和6.最后，它将开发和使用评价工具， 执行其使命所用方法的有效性。

The Boston Sickle Cell Center is structured into five (5) main components: (1) Administration, (2) Research, (3) Testing, (4) Education and Counseling, and (5) Central Data Bank and Resource File. Through the coordinative efforts of these components the BSCC proposes to reach its specific aims as follows: 1. to sponsor and support research in the field of hemoglobinopathies conducted through our Center in five (5) major institutions in Boston: Boston University School of Medicine, Tufts-New England Medical Center, Children's Hospital Medical Center, Beth Israel Hospital and St. Elizabeth's Hospital; 2. the Center will continue to test the population "at risk" for hemoglobin S gene and/or G6PD in the Boston area and will expand services to other communities where there is a population "at risk"; 3. the Center will begin to test for beta-thalassemia trait; 4. it will provide education and non-directive counseling to individuals identified with variant hemoglobin traits and G6PD deficiency, and counsel, support and offer direct patient services to individuals with sickle cell disease and their families; 5. it will also increase the level of awareness of knowledge about sickle cell trait and sickle cell disease within the general public through educational programs; and 6. finally it will develop and use evaluative tools to assess the effectiveness of methods used in carrying out its mission.