Rare Disease Clinical Research Training Program

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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.