Study of Cerebellar Mutism Syndrome in Children With Brain Tumors in the Posterior Fossa Exploring Causes, Progress, and Treatment Approaches

What this Trial Is About

This research investigates why up to 25% of children who have surgery for tumors in the posterior fossa develop Cerebellar Mutism Syndrome CMS. CMS is a challenging condition marked by mutism, low muscle tone, coordination problems, and irritability. The study aims to understand the causes, clinical progress, and best ways to treat this syndrome in pediatric patients. The study is an observational, prospective, multicenter project including at least 2000 children from Nordic countries who have posterior fossa central nervous system tumors and undergo surgery or biopsy. Patients are treated according to local standards, while clinical data and imaging are collected centrally. Blood samples are gathered for genetic analysis, and neurological and speech assessments are done before and repeatedly after surgery. Data are recorded at five key times before surgery, within 72 hours after surgery, 1-4 weeks post-surgery, around 2 months post-surgery, and approximately 12 months post-surgery. If patients have repeated surgeries within 12 months, follow-up restarts accordingly. Participants will undergo neurological and speech function tests, including speech recordings, with extra assessments for children under 2 years. Blood samples are analyzed for genetic markers linked to CMS risk. Imaging and speech recordings are reviewed by specialists. Data quality is ensured by a third party. The main outcome measured is the development and progression of CMS one year after surgery. The study also tracks speech output reduction and treatments used during follow-up. Participation may last up to 12 months or longer if multiple surgeries occur.

Cerebellar Mutism Syndrome Study