NORDIC: Study investigating speech issues in paediatric brain tumour patients

NORDIC CMS, a new trial launched in January 2024, will evaluate Cerebellar Mutism Syndrome (CMS) in children undergoing posterior fossa (PF) surgery for a cerebellar tumour.

Paediatric Central Nervous System (CNS) tumours account for 25% of all cancers in children and lead to the most frequent and severe long-term effects. CMS frequently affects CNS tumour patients and is a common complication following surgical resection of childhood tumours arising in the PF. Impacts on speech ability, up to muteness, is the main sign of post-operative CMS.

Although some patients do recover completely, many are left with permanent sequelae in the form of severe speech issues, ataxia, emotional problems and lower IQ. Unfortunately, little is known about prevention or treatment of this condition.

NORDIC CMS is an observational prospective multicentre study that will include a minimum of 1000 paediatric patients with PF CNS tumours. Clinical data will be collected, speech testing and analysis will be done and blood samples for genetic analysis will be collected. With this approach, researchers hope to better understand CMS and hope to identify potential risk factors related to genetics, medication, radiotherapy, tumour type and handedness.

The study’s primary objective is to determine which surgical methods are least likely to cause CMS and if there is a difference in risk between primary surgery and re-operation.

The international sponsor of the NORDIC CMS study is the University Hospital Righospitalet in Copenhagen. In Belgium, the trial is coordinated by the University Hospital Leuven, with Prof. Jürgen Lemiere and Prof Dr Sandra Jacobs acting as the national coordinating investigators. All Belgian paediatric haematology-oncology centres are participating in this trial and 40-50 patients are expected to be recruited.

This trial is open in Belgium thanks to the financial support of the Kinderkankerfonds (through end of 2024).