SCTaware: A Comprehensive Program to Increase Sickle Cell Trait Knowledge and Awareness Among Parents of Infants Identified by Newborn Screening

项目总结/摘要 近300万非洲裔美国人患有镰状细胞性状（SCT），并且有患镰状细胞的风险 SCD是一种严重的慢性血液病。超过80%的人不知道或 理解他们的SCT地位，尽管SCT地位可能对未来产生重大影响， 生殖决定。有效地教育通过新生儿筛查确定患有SCT的婴儿的父母， 很危险这些父母是向患有SCT的孩子传授SCT和SCD知识的关键，因为他们 成熟，许多父母可以利用这些知识来告知他们自己未来的生育决定， 因为这些父母也被认为患有SCT。然而，初步研究 提示SCT婴儿父母通常健康素养低，基线SCT知识低 这可能会限制他们通过目前的教育获得高水平和持续知识的能力， 提供了该提案的目标是制定一个以健康素养为基础的 该计划（SCTaware）为父母提供现场SCT测试，并确定可能 阻止父母了解自己的SCT状况或获得SCT检测。核心假设是 SCTaware教育将是可行的，并将导致高和持续的父母知识 关于SCT和SCD随着这些目标的成功完成，SCTaware可以扩展到 患有SCD的儿童的父母，他们的知识和健康素养也很低，使他们能够 为他们的孩子做出明智的健康决定，并增加有效SCD的使用和坚持 治疗（例如，羟基脲）。本申请直接响应NHLBI有限竞争R 03 职业发展获奖者计划（RFA-HL-18-025）。因此，完成拟议的研究是 期望促进独特和必要的资源（有效的SCD教育计划）的发展 这将加速一个成功的K23获奖者的职业发展，走向独立的临床 研究员PI将利用此资源成功竞争R 01资金，以确定影响 一个有效的SCD教育计划和一个创新的羟基脲依从性干预对 SCD儿童的结局。

PROJECT SUMMARY/ABSTRACT Nearly 3 million African Americans have sickle cell trait (SCT) and are at risk of having a child with sickle cell disease (SCD), a severe and chronic blood disorder. More than 80% of these individuals do not know or understand their SCT status, despite the significant implications that SCT status can have on future reproductive decisions. Effectively educating parents of infants with SCT identified by newborn screening is critical. These parents are key to passing on knowledge about SCT and SCD to their children with SCT as they mature, and many of the parents can use this knowledge to inform their own future reproductive decisions, since these parents are also presumed to have a high prevalence of SCT. However, preliminary studies suggest that parents of infants with SCT frequently have low health literacy and baseline low SCT knowledge that may limit their capacity to achieve high and sustained knowledge with the education that is currently provided. The objectives of this proposal are to develop an engaging and effective health literacy-based program (SCTaware) that makes on-site SCT testing available for parents and to identify barriers that may prevent parents from knowing their own SCT status or from obtaining SCT testing. The central hypothesis is that SCTaware education will be feasible to implement and will result in high and sustained parental knowledge about SCT and SCD. With the successful completion of these objectives, SCTaware could be extended to parents of children with SCD, who also have low knowledge and health literacy, to enable them to make informed health decisions for their children and to increase utilization of and adherence to effective SCD therapies (e.g., hydroxyurea). This application is directly responsive to the NHLBI Limited Competition R03 program for career development awardees (RFA-HL-18-025). Thus, completion of the proposed research is expected to facilitate the development of a unique and needed resource (an effective SCD education program) that will accelerate the career progression of a successful K23 awardee toward independence as a clinical researcher. The PI will leverage this resource to successfully compete for R01 funding to determine the impact that an effective SCD education program and an innovative hydroxyurea adherence intervention have on the outcomes of children with SCD.