ARISEN (Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus research Network)

Emory University, Atlanta GA

Investigators

Abstract

Career Enhancement Core – Project Summary The overall goal of the Autoimmunity, Rasmussens, Inflammation & Status Epilepticus Research Network (ARISEN) Career Enhancement Core (CEC) is to encourage, support, and train the next generation of clinical/translational investigators studying rare neuroinflammatory disorders including autoimmune encephalitis, Rasmussens, and NORSE. There is a shortage of physician-scientists studying rare neuroinflammatory diseases, particularly those with pediatric expertise. The ARISEN CEC will cultivate an efficient and effective pathway for current and future investigators dedicated to this area of research with the ultimate objective of developing a collaborative, diverse, and multi-disciplinary community dedicated to researching these diseases. To achieve these goals, the CEC will build on strong existing infrastructure, institutional resources, and the team’s expertise to encourage, support, and train promising investigators new to researching these diseases. We will use comprehensive evaluation tools to track publications, presentations, funding, new collaborations, and perform qualitative assessments. The CEC leadership is a multidisciplinary and expert leadership team and a resource-rich foundation that will be complemented by the meaningful involvement of successful rare disease research faculty who all have strong track records of successful research mentoring. The ARISEN CEC will achieve these goals through the following aims: Aim 1 will provide outreach, networking, and broad curricular educational opportunities to attract, mentor, support, and retain trainees and new researchers in fields related to rare neuroinflammatory disease research. We will recruit an ARISEN investigator cohort comprised of early-stage investigators and researchers new to the field pursuing neuroinflammatory disease research. We will host monthly seminars and partner with patient advocacy groups to organize panel discussions with patients and caregivers highlighting their experiences and challenges. Inviting medical students, residents, and fellows to attend the patient days will be done with the purpose of inspiring researchers early on in their training. Aim 2 will focus on supporting future endeavors in rare disease research through mini-grant funding opportunities named the “ARISEN Opportunity Fund” to early stage and new investigators removing barriers to critical career-enhancing activities. These funds will be used for conference travel, publication costs, specialized career development training, and collection of preliminary data to facilitate the pursuit of rare disease research. The CEC is expected to award several smaller awards to encourage and facilitate the research of multiple investigators each year. Aim 3 will provide customized mentored training to accomplish rare disease research through: 1) a concierge approach with customized course and workshop recommendations, 2) specialized seminars and panel discussions on the fundamentals of developing multi-center patient registry infrastructure and 3) creating an exchange program to facilitate invited talks and specialized hands-on training opportunities for these investigators from other institutions.