Implementation and Implications of Sickle Cell Trait Screening in the NCAA

镰状细胞性状筛查在 NCAA 中的实施及其意义

• 批准号: 10205133
• 负责人: CHARMAINE DAWN MARIE ROYAL
• 金额: $ 75.17万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-20 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10205133
• 关键词: Address; Adopted; Affect; African American student; Area; Athletic; Attitude; Behavior; Benefits and Risks; Cessation of life; Complication; Data; Decision Making; Detection; Dimensions; Education; Effectiveness; Financial Hardship; Foundations; Future; Genetic; Genetic Counseling; Genetic Risk; Genetic Screening; Guidelines; Head; Health; Health Policy; Individual; Institution; Institutional Policy; Instruction; Intervention; Knowledge; Legal; Literature; Modification; Monitor; North Carolina; Outcome; Participant; Perception; Physicians; Policies; Procedures; Public Health; Publishing; Race; Recommendation; Reporting; Research; Research Personnel; Resolution; Risk; Sampling; Schools; Sickle Cell Trait; Source; Sports; Stigmatization; Structure; Surveys; Telephone Interviews; Testing; United States; Universities; Variant; Work; base; behavioral outcome; college; cost; economic cost; effective intervention; ethical legal social implication; experience; frontier; implementation outcomes; implementation process; member; mortality; population based; prevent; programs; risk minimization; screening; screening policy; screening program; social stigma; student athlete; symposium; trait; waiver

ABSTRACT In 2010 the National Collegiate Athletic Association (NCAA) adopted a mandatory sickle cell trait (SCT) screening policy for student-athletes in its Division I (DI) colleges and universities. Currently, schools in all three divisions of the NCAA are implementing the policy. To date, very little published research is available on SCT in student-athletes or on the actual implementation of the NCAA screening policy. Many important questions remain regarding this controversial mandated genetic screening program. Results from a preliminary study we conducted of NCAA DI institutions in North Carolina reveal that athletic staff at most of the schools found it beneficial to know the SCT status of their student-athletes, but felt they need clearer guidance and instructions from the NCAA on the policy implementation. We also found that that some athletic staff and student-athletes believed that black students were the only ones at risk and should be the targets for screening. There has been little education for coaches, athletic trainers, and student-athletes on reasons for screening all student-athletes. Of the few student-athletes with SCT in our sample, only about one-half changed the way they participate in their sport based on their status. These and our other preliminary findings provide important information concerning the procedures, perspectives, and behavioral outcomes at some institutions in one US state. A larger and more representative sample is needed to better understand the policy’s challenges, limitations, and risks, and to develop strategies to address them. This proposal builds upon our previous work in North Carolina. The Specific Aims are to: 1) assess implementation, risks, and secondary benefits of the NCAA SCT screening policy and determine contributors to and implications of variation within these domains and 2) provide guidance on the current NCAA SCT policy and practice and other similar public health policies and practices. For Aim 1, data will be generated from online surveys and semi-structured telephone interviews with athletic staff and student-athletes at NCAA DI, DII, and DIII colleges and universities. For Aim 2, we will collaborate with the NCAA to convene a national summit involving selected stakeholders at institutional and policy levels to review the findings from Aim 1 and develop best practice recommendations for future implementation of the SCT screening policy. The proposed research will provide unprecedented and invaluable information on the procedures, perceptions, and outcomes of the NCAA SCT screening policy. It will uncover real and perceived benefits, risks, and effectiveness of the policy, and facilitate efforts to address the areas of concern. The project will also establish a useful empirical foundation for decision-making concerning future implementation of the NCAA policy and similar policies and programs aimed at preventing illness and protecting the public’s health.

摘要 2010年，全国大学生体育协会(NCAA)通过了一项强制性的镰状细胞特征(SCT) I级(DI)学院和大学对学生运动员的筛选政策。目前，所有的学校 NCAA的三个部门正在实施这项政策。到目前为止，已发表的研究成果很少。 关于学生运动员的SCT或NCAA筛查政策的实际实施。许多重要的 关于这一有争议的强制基因筛查计划，问题仍然存在。 我们对北卡罗来纳州的NCAA DI机构进行的初步研究结果显示， 大多数学校的体育工作人员发现，了解学生运动员的SCT状况是有益的，但他们认为 他们需要NCAA在政策执行方面提供更明确的指导和指示。我们还发现， 一些体育工作人员和学生运动员认为黑人学生是唯一处于危险之中的人，应该 成为筛查的对象。对教练、运动教练和学生运动员的教育很少。 关于对所有学生运动员进行筛选的原因。在我们样本中少数患有SCT的学生运动员中，只有大约 一半的人根据自己的地位改变了他们参与体育运动的方式。这些和我们的其他初步调查 研究结果提供了有关程序、视角和行为结果的重要信息 美国一个州的一些机构。需要更大和更具代表性的样本才能更好地理解 政策的挑战、限制和风险，并制定应对它们的战略。 这项提议建立在我们之前在北卡罗来纳州所做工作的基础上。具体目标是：1)评估 NCAA SCT筛查政策的实施、风险和次要好处，并确定贡献者 对这些领域内的变化及其影响，以及2)为当前的NCAA SCT提供指导 政策和实践以及其他类似的公共卫生政策和实践。对于目标1，将生成数据 来自在线调查和对体育工作人员和学生运动员的半结构化电话采访， NCAA DI、DII和DIII学院和大学。对于目标2，我们将与NCAA合作，召开一次 由选定的机构和政策层面的利益攸关方参加的国家峰会，以审查从 目标1，并为今后小班筛查政策的实施制定最佳实践建议。 拟议的研究将提供有关程序的史无前例和宝贵的信息， NCAA SCT筛查政策的看法和结果。它将揭示实际和预期的好处， 风险和政策的有效性，并促进努力解决令人关切的领域。该项目还将 为NCAA未来实施的决策奠定有用的经验基础 旨在预防疾病和保护公众健康的政策和类似政策和方案。