Autoimmunity, Rasmussen's, Inflammation And Status Epilepticus research Network

The Autoimmunity, Rasmussen's, Inflammation & Status Epilepticus research Network (ARISEN) is part of the [Rare Diseases Clinical Research Network](https://rarediseasesnetwork.org/) (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the [National Center for Advancing Translational Sciences](https://ncats.nih.gov/ "Learn more from NCATS. Opens in New Window.") (NCATS) through its Division of Rare Diseases Research Innovation (DRDRI). ARISEN is funded under grant number U54HD122209 as a collaboration between NCATS and the [*Eunice Kennedy Shriver* National Institute of Child Health and Human Development](https://www.nichd.nih.gov/ "Learn more about the NICHD. Opens in New Window.") (NICHD). This website is hosted by the network's Data Management and Coordinating Center at Cincinnati Children's Hospital Medical Center, which is funded by NCATS and the [National Institute of Neurological Disorders and Stroke](https://www.ninds.nih.gov/ "Learn more from NINDS. Opens in New Window.") (NINDS) under grant number TR002818. The content of this website is solely the responsibility of the ARISEN administrative coordinating center at Emory University and does not necessarily represent the official views of the NIH. **Overall Goals** 1. To improve lives of people who are diagnosed with autoimmune encephalitis (AE), Rasmussen syndrome (RS)/Rasmussen's encephalitis (RE), and new onset refractory status epilepticus (NORSE), including its sub-type, febrile infection-related epilepsy syndrome (FIRES). 2. Early diagnosis and effective treatment in these conditions 3. Facilitate research in these conditions 4. Establish a multi-center patient registry including patient- and caregiver reported outcomes, clinical database, improved clinical outcome measures that reflect lived experience, biorepository, EEG database, and an MRI database. 5. Develop and maintain a website with up-to-date information for clinicians, patients, caregivers, and communities affected by these diseases. **Pilot Core goals:** ARISEN welcomes proposals that tackle the unmet needs in these conditions. These proposals will utilize the Rare Diseases Clinical Research Consortia (RDCRC) network, develop new resources, and foster collaboration. **Career Core goals:** We will train the next generation of scientists in these conditions by providing educational sessions, mentorship, access to the registry, and funding support. **Patient Advocacy Goals** In collaboration with our partner patient advocacy groups (PAGs), we will: - Partner together on research projects important to our PAGs - Build effective communication pathways to keep patients and families informed of new clinical and research developments through websites, newsletters, social media, and conferences. - Establish a forum to highlight patient and family voices by collecting and sharing their perspectives and priorities - Provide public educational programs to raise awareness of these diseases **Mission** ARISEN is dedicated to advancing research, collaboration, and patient-centered innovation to improve understanding, diagnosis, and treatment of autoimmune encephalitis (AE), Rasmussen syndrome (RS)/Rasmussen's encephalitis (RE), and new onset refractory status epilepticus (NORSE), including its sub-type, febrile infection-related epilepsy syndrome (FIRES). We unite clinicians, scientists, patients, and families to accelerate discovery, foster education, and translate breakthroughs into meaningful care for those affected by these rare and devastating neurological diseases. **Vision** We envision a world in which these diseases are detected early, with cures and treatments to empower people to recover completely.