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罕见疾病研究（RDR）课程的目标是准备一个多学科和多样化的小组 每年有50名学者在遗传和非遗传罕见病方面进行临床和转化研究 紊乱这将通过一年80小时的混合教学模式来实现。这一目标 该计划是创建在线模块，播客式讲座，录制教学式讲座和亲自 经验，使来自不同学科和不同背景的学习者积极参与这一 RDR课程。RDR和护理提供领域认识到，合作研究和团队科学是 这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， 有必要培训来自代表性不足的人口的共和国重建领导人和从业人员， 医学（UIM）。作为这一目标的一部分，我们还将优先从这些国家招募学者， 人口，目标是至少有20%的学者来自人口UIM。招聘将 包括推出一个更广泛的学科名单，我们将从中招募学者，并创建 校友参与计划我们还将强调研究人员和学者将如何“把桌子上， 参与者”。通过改变下一代临床研究人员如何看待招聘， 通过参与多样化的家庭和罕见疾病患者社区，我们期望促进卫生公平。