Every year, around 30 to 35 children in the Netherlands are diagnosed with a tumor in the cerebellum, a part of the brain that controls movement, as well as functions such as speech and information processing. During the operation to remove the tumor, healthy tissue can be damaged. One in four children who have surgery for a tumor in the cerebellum is temporarily unable to speak, due to cerebellar mutism syndrome (CMS). Children with this condition can also have difficulty moving and swallowing, and are often irritable. While their speech does come back - sometimes after a few days, sometimes only after several months - some children continue to have difficulty pronouncing words properly and have problems with attention and memory.
Searching for causes and solutions
In the FASTigial study, researchers in the Partanen group and departments of Neuro-Oncology and Medical Psychology at the Princess Máxima Center are looking at the brain structures that may be damaged during surgery. ‘We think that damage to the nerve pathways in the cerebellum plays a role in the development of CMS,’ says Iris Obdeijn, a PhD candidate who works on the study. ‘If our research confirms this, surgeons could in the future perhaps operate differently to spare those nerve pathways. A better understanding of the causes of CMS could also help to better inform children and parents about the development and recovery of CMS.’
Advanced imaging techniques
The study uses advanced MRI imaging to map out the nerve pathways as well as the blood flow to the brain. ‘We scan the child’s brain before the operation, shortly afterwards and a year later. This allows us to monitor changes in the brain and the children’s recovery,’ explains Obdeijn. In addition to the MRI scans, children are given neuropsychological tests to measure skills such as concentration, working memory and planning. Parents complete questionnaires about their child’s speech and behavior, using the KLIK portal. Outside the Netherlands, participating parents make use of an app to fill in the questionnaires, which was specially developed for the trial together with the PROM facility.
Improved quality of life
The FASTigial study will be open in seven European countries and aims to include 210 children, 80 of whom will be children treated at the Máxima Center. The first children in the Netherlands have been scanned before and after their surgery. The researchers expect the study results in the course of 2028. Dr Marita Partanen, who leads the international study from the Máxima Center, says: ‘We hope our study will offer new insights into the development and recovery of speech problems after surgery in the cerebellum. We aim to prevent children from developing long-term residual symptoms and we hope to be able to support them better in their recovery. With our research, we are making an important contribution to an improved quality of life for children with a tumor in the cerebellum.’