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

Emory University, Atlanta GA

Investigators

Abstract

Pilot Projects Core: Project Summary The aim of the Pilot Projects core is to create a program in which investigators could apply for pilot funding for projects leveraging ARISEN (Autoimmunity, Rasmussens, Inflammation & Status Epilepticus research Network). The goal of this pilot funding would be to support studies aimed at advancing clinical trial readiness, management and/or treatment of autoimmune encephalitis, Rasmussen syndrome and new onset refractory status epilepticus (NORSE). We will encourage investigators to expand beyond the resources of the ARISEN consortium to push the field further and foster further collaborations. These collaborations can then be rolled back into the ARISEN consortium for longitudinal growth of the network. This pilot/feasibility projects core is essential to continuing rare disease research as it provides funding opportunities to encourage investigators with diverse expertise and interests to leverage ARISEN’s resources, clinical data, biospecimens, and registry. We will also partner with our patient advocacy groups for the call for applications and review of applications. We will initially support one pilot project per year and aim to increase that to two per year with financial partnership with and support from our patient advocacy groups. The investigators involved in the Pilot Projects core are an experienced, diverse group of individuals from different institutions and different backgrounds. We would select those project applications that are aimed at improving the diagnosis, management, and/or treatment of the diseases in this registry. Aim 1 will solicit pilot project applications to advance research in autoimmune encephalitis, Rasmussen syndrome, and NORSE and Aim 2 will help to establish a rigorous, unbiased, and transparent review process for grants, and select projects that achieve the goals of ARISEN. For the review process, we will use a similar process as used by NIH study sections. We will include a diverse reviewer pool and include junior investigators from the Career Enhancement Program to provide training on the grants review process. This will allow for a review and selection process that is rigorous and unbiased, while also providing training for junior investigators. All reviewers will take NIH online reviewer training and implicit bias training offered by Emory University. The review criteria would include: 1) Relevance to the autoimmune encephalitis, Rasmussen syndrome, and NORSE; 2) Significance and the potential for this project to advance the field; 3) Rigor of the experimental plan; 4) Identification of clear outcome metrics, 4) Investigator qualifications and expertise to carry out the pilot project, with priority for Early Stage Investigators; 5) Potential for future funding; 6) Promoting collaboration across the ARISEN participating sites, including leveraging existing resources and infrastructure; 7) Feasibility: the likelihood that the project can be achieved in a one-year timeline and with the budget proposed. Aim 3 will oversee pilot/feasibility projects and the outcomes of the projects including additional grants and publications. The goal of this core is to fund projects that will generate data for potentially highly impactful studies, have demonstrated empirical proof-of-concept, and will gain access to external funding sources.