Nordic CMS (brain tumors)

Recruiting

Who can enter

• Children/adolescents who will have surgery/had surgery for a tumor in the brain or brainstem

• Age: 0 up to and including 17 years old

Goal

The goal of this study is to learn more about the cerebellar mutism syndrome. Children and adolescents with this syndrome have problems with speaking or cannot speak anymore after surgery.

We will investigate how often this syndrome occurs after surgery. We will also look at several factors that can influence this syndrome. We will look at the factors:

• Surgery techniques (operation)

• Genetic factors

• Medication

• Other health issues, for example type of tumor, left or right handedness

Background

Around 25% of the children with surgery for a tumor in the cerebellum or brainstem develops cerebellar mutism syndrome. Besides problems with speaking or inability to speak, these children can have problems with:

• Precise movements of arms and legs

• Eating and drinking

• Being more irritable

The syndrome is usually temporary. Some children keep having problems with speaking and moving.

We know that this syndrome is caused by the surgery. However, we do not know exactly how that works and how we can prevent this syndrome. Therefore, in this study we want to learn more about this syndrome. To do so, we will collect a variety of data from patients who will have surgery or had surgery for a tumor in the cerebellum or brainstem.
We will collect:

• Medical data, for example the type of tumor

• Short recordings of the child’s speech

• 1 blood tube sample

Part of the children participating in this study will develop the cerebellar mutism syndrome and the other part will not. We will compare these two groups. This way we can learn more about this syndrome and the factors that contribute to the syndrome. And we hope to be able to improve treatment and prevent this syndrome in the future.

For this study, we will only collect data and blood. The study does not affect the treatment of the children/adolescents.

In order to participate in a study please refer to your/your child’s doctor.

Last reviewed

March 23, 2026

The above information is intended as a brief summary only and may not reflect the most up-to-date information. For full details and the current status of a protocol, physicians can contact the Princess Máxima Center directly.