Rare Disease Clinical Research Training Program

罕见病临床研究培训计划

• 批准号: 10489961
• 负责人: MARK L. BATSHAW
• 金额: $ 16.15万
• 依托单位: CHILDREN'S RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-01 至 2027-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10489961
• 关键词: Address; Adult; Clinical; Clinical Research; Collaborations; Communities; Creativeness; Discipline; Education Projects; Educational Curriculum; Educational process of instructing; Environment; Family; Future; Genetic; Goals; Individual; Institutional Racism; Medicine; Mentors; Mentorship; Minority Groups; Modeling; Participant; Patients; Personal Satisfaction; Persons; Population; Rare Diseases; Research; Research Personnel; Science; Therapeutic; Training; Training Programs; Translational Research; Underrepresented Populations; base; care delivery; career; education research; experience; flexibility; health equity; health equity promotion; improved; lectures; multidisciplinary; next generation; non-genetic; programs; recruit; skills; theories; virtual

Abstract The goal of the R25 Rare Disease Research (RDR) curriculum is to prepare a multidisciplinary and diverse group of 50 Scholars per year to perform clinical and translational research in both genetic and non-genetic rare disorders. This will be accomplished using a one-year 80 hr. blended teaching model. An objective of this program is to create online modules, pod cast-style lectures, recorded didactic-style lectures and in person experiences that enable learners from different disciplines and diverse backgrounds to actively participate in this RDR curriculum. The field of RDR and care delivery recognizes that collaborative research and team science are critical to improving therapeutic opportunities and wellbeing of the rare disease community. This concept serves as the unifying theme of the curriculum. Furthermore, in addressing the issue of health equity and systemic racism there is the need for training RDR leaders and practitioners from populations underrepresented in medicine (UIM). As part of this objective, we will also prioritize the recruitment of Scholars from these populations with the goal of having at least 20% of Scholars coming from populations UIM. Recruitment will include the launching of a more expansive list of disciplines from which we will recruit scholars and creation of an alumni participation program. We also will highlight how researchers and Scholars will “bring the table to the participants” in RDR. By changing how the next generation of clinical researchers view recruitment and engagement in the diverse family and patient rare disease communities, we expect to advance health equity.

摘要 R25罕见病研究(RDR)课程的目标是准备一个多学科和多样化的群体 每年50名学者进行罕见遗传和非遗传的临床和翻译研究 精神错乱。这将使用一年的80小时来完成。混合式教学模式。这样做的一个目标是 方案是创建在线模块、播客播音式讲座、录音授课式讲座和面对面授课 使来自不同学科和不同背景的学习者能够积极参与此活动的体验 RDR课程。RDR和护理交付领域认识到，协作研究和团队科学是 对改善罕见病社区的治疗机会和福祉至关重要。这一概念服务于 作为课程的统一主题。此外，在解决卫生公平和系统性问题时， 种族主义有必要培训民主联盟领导人和从业者，这些领导人和从业者来自在 医学(UIM)。作为这项目标的一部分，我们还将优先从这些机构中招聘学者 目标是至少有20%的学者来自UIM人口。招聘将 包括推出一个更广泛的学科清单，我们将从这些学科中招聘学者，并创建 校友参与计划。我们还将重点介绍研究人员和学者将如何“将谈判桌 参与者“在RDR中。通过改变下一代临床研究人员看待招聘和 通过参与不同的家庭和患者罕见疾病社区，我们希望促进卫生公平。