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: 10842764
• 负责人: CHARMAINE DAWN MARIE ROYAL
• 金额: $ 8.58万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-15 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10842764
• 关键词: Address; Adopted; Affect; African American student; Area; Athletic; Attitude; Behavior; Benefits and Risks; Cessation of life; Complication; Data; Data Analyses; Data Collection; Decision Making; Detection; Dimensions; Education; Effectiveness; Financial Hardship; Foundations; Funding; Genetic; Genetic Counseling; Genetic Risk; Genetic Screening; Grant; Guidelines; Head; Health; Health Policy; Individual; Information Dissemination; Institution; Instruction; Intervention; Knowledge; Legal; Literature; Methods; 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; Translations; United States; Universities; Variant; Work; college; cost; economic cost; effective intervention; ethical, legal, and social implication; experience; frontier; future implementation; implementation evaluation; implementation process; member; mortality; population based; prevent; programs; racial population; 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. Therefore, it is necessary to better understand the policy's challenges, limitations, and risks, and to develop strategies to address them. Our funded grant (R01HG010364-01A1) has two aims: 1) assess implementation, risks, and secondary benefits of the NCAA SCT screening policy and determine contributors and implications of variation within these domains using a mixed methods approach and 2) provide guidance on the current NCAA SCT policy and practice and other similar public health policies and practices. Currently, we have completed data collection and are working on data analysis to address Aim 1. To better interpret the results and develop strategies to address the challenges in the policy, we will convene a national summit involving selected researchers, practitioners, and decision-makers at institutional and policy levels. Summit participants will review the findings from Aim 1, examine existing SCT management guidelines from the NCAA and NATA, collaboratively develop recommendations for modifications to current procedures as needed, and identify and disseminate best practices for future implementation of the NCAA SCT policy. Grounding of our research in the policy implementation literature will also allow us to consider how our findings can inform other population-based genetic screening efforts. This supplement will facilitate the planning and execution of the national summit (Aim 2) and advance the interpretation, application, translation, and dissemination of the results from Aim 1. Specifically, the summit will provide a unique opportunity to share unprecedented information about the procedures, perceptions, and outcomes of the NCAA policy with a diverse group of experts. It will also enable critical examination of real and perceived benefits, risks, and effectiveness of the NCAA policy and other public health genetics policies, and expedite efforts to address areas of concern. Overall, the project will 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.

抽象的 2010年，国家大学体育协会（NCAA）采用了强制性的镰状细胞特征（SCT） 在其I（DI）大学和大学中，学生运动员的筛查政策。目前，所有学校 NCAA的三个部门正在实施该政策。迄今为止，很少有关于 SCT在学生运动员或NCAA筛选政策的实际实施中。许多重要 关于这个有争议的强制性基因筛查计划仍然存在问题。因此，有必要 更好地了解该政策的挑战，局限性和风险，并制定解决方案的策略。 我们资助的赠款（R01HG010364-01A1）有两个目的：1）评估实施，风险和次要 NCAA SCT筛选政策的好处，并确定贡献者和差异的影响 这些域使用混合方法方法和2）提供有关当前NCAA SCT政策的指导 实践和其他类似的公共卫生政策和实践。目前，我们已经完成了数据收集 并正在研究数据分析以解决目标1。更好地解释结果并制定策略 应对政策中的挑战，我们将召集涉及选定研究人员的全国首脑会议， 从业者和机构和政策层面的决策者。峰会参与者将审查调查结果 从AIM 1中，检查NCAA和NATA的现有SCT管理指南，协作开发 建议根据需要对当前程序进行修改，并确定和传播最佳 未来实施NCAA SCT政策的实践。我们在政策中的研究基础 实施文献还将允许我们考虑如何向其他基于人群的发现提供信息 基因筛查工作。 这种补充剂将促进国家峰会的计划和执行（AIM 2）并提高 AIM 1的结果解释，应用，翻译和传播。 Summit将提供一个独特的机会来分享有关程序的前所未有的信息， 与多样的专家团体的NCAA政策的看法以及成果。这也将使批判 检查NCAA政策和其他公共卫生的实际收益，风险和有效性 遗传学政策，并加快解决问题领域的努力。总体而言，该项目将建立有用的 关于未来实施NCAA政策和类似的决策基础 旨在预防疾病和保护公众健康的政策和计划。