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.

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）。 在其第一组（DI）学院和大学的学生运动员筛选政策。目前，所有学校 NCAA的三个部门正在实施这项政策。到目前为止，很少有发表的研究是可用的， SCT在学生运动员或对NCAA的筛选政策的实际执行。许多重要 关于这项有争议的强制性基因筛查计划，仍存在一些问题。因此有必要 更好地了解政策的挑战、局限性和风险，并制定应对策略。 我们的资助赠款（R 01 HG 010364 - 01 A1）有两个目的：1）评估实施情况，风险和次级 NCAA SCT筛选政策的好处，并确定贡献者和变化的影响， 这些领域使用混合方法的方法和2）提供对当前NCAA SCT政策的指导， 实践和其他类似的公共卫生政策和做法。目前，我们已经完成了数据收集 并致力于数据分析，以实现目标1。为了更好地解释结果并制定战略， 为了应对政策中的挑战，我们将召开一次由选定的研究人员参加的全国首脑会议， 机构和政策层面的实践者和决策者。峰会与会者将审查调查结果 从目标1开始，检查NCAA和NATA现有的SCT管理指南， 根据需要提出修改现行程序的建议，并确定和传播最佳做法， 为今后实施NCAA SCT政策提供实践。政策研究的基础 实施文献还将使我们能够考虑我们的研究结果如何告知其他基于人口的 基因筛查工作。 这份补编将有助于规划和执行全国首脑会议（目标2），并推动 目标1结果的解释、应用、翻译和传播。具体而言是 首脑会议将提供一个独特的机会，分享有关程序的前所未有的信息， 的看法，和NCAA政策的结果与不同的专家组。它还将使关键的 审查NCAA政策和其他公共卫生政策的真实的和感知的利益，风险和有效性 在这方面，我们将继续采取措施，加强遗传学政策，并加快努力解决关切领域的问题。总的来说，该项目将建立一个有用的 关于NCAA政策和类似的未来实施决策的经验基础 旨在预防疾病和保护公众健康的政策和计划。