Swiss National Registry for Pediatric Inflammatory Brain Diseases Tracking Diagnosis, Treatment, and Outcomes

What this Trial Is About

This research aims to build a national registry in Switzerland for children and adolescents diagnosed with various inflammatory brain diseases IBrainDs, such as multiple sclerosis and autoimmune encephalitis. These diseases affect brain development and can cause neurological and cognitive challenges impacting school and life achievements. The registry addresses the need for timely diagnosis, better disease understanding, and improved care by collecting comprehensive data on pediatric IBrainD cases starting from 2005. The registry collects information from multiple pediatric and neurological centers across Switzerland, including hospitals in Bern, Basel, Geneva, and others, with plans to expand further. It gathers data from medical records, physician and family reports, questionnaires, and routine statistics without altering usual diagnosis or treatment. The study includes patients diagnosed before age 18 and tracks their clinical course, treatments, education, and outcomes over time. Participants data include personal details, diagnosis, symptoms, hospitalizations, medication changes, MRI and laboratory results, and neurological assessments, collected from diagnosis until adulthood and beyond. The registry supports long-term monitoring and research collaboration, aiming to enhance treatment and quality of life for affected children. Participation involves consent and data sharing but does not require extra procedures beyond standard care.

Swiss Pediatric Inflammatory Brain Disease Registry (Swiss-Ped-IBrainD)