New national research consortium to help children with brain tumours

A new research programme will gather activities and cross-disciplinary experts from Aarhus University Hospital and Rigshospitalet to improve treatment for Danish children with brain tumours and reduce late complications and side effects.

Approximately 45 children under 18 in Denmark are diagnosed with a brain tumour every year. With DKK 12 million from Børnecancerfonden (a foundation for research into childhood cancer), a new research programme will gather activities and cross-disciplinary experts from Aarhus University Hospital and Rigshospitalet to improve treatment for Danish children with brain tumours and reduce late complications and side effects.

Over the past 10-15 years, Danish research has improved the treatment of Danish children with the most frequent cancer diagnosis, acute leukaemia, so that this treatment is now among the best in the world. There have also been improvements in survival rates for children with the second-most common diagnosis, brain tumour, but 20% of these children and youngsters still do not survive, and those who do survive have the highest risk of developing serious disabilities from the disease and treatment compared with childhood cancer patients. This is because the location of the tumours makes them hard to treat.  A new national childhood brain-tumour consortium (Danish Collaborative Comprehensive Childhood CNS tumour Consortium (5C)) will lighten this gloomy prognosis with a grant of DKK 12 million from Børnecancerfonden.

“We’ve managed to improve the prognosis for children with acute leukaemia through targeted research, but a child with a brain tumour presents different, more complex challenges, among other things because the diagnosis covers more than 100 different sub-diagnoses. Today, we have new technological possibilities within gene technology and molecular biology, for example. These can enhance our knowledge about brain tumours, and with the large funding we have now received, there’s a good possibility that in the long term we’ll be able to improve treatment and reduce the many side-effects,” said Prof. Kjeld Schmiegelow from the childhood cancer department at Rigshospitalet and head of the new childhood brain tumour consortium.

International collaboration
Danish childhood cancer research is already looking at brain tumours, but preparing a cross-disciplinary and national strategy that coordinates several areas in one combined research programme is unique. The very complexity of brain tumours demands collaboration if we are to  improve the survival rate, and the new consortium is also linked to a strong, international advisory board with, among others, Prof. Eric Bouffet, head of the brain tumour programme at Sick Kids, Toronto, Canada, and Prof. Stefan Pfister, professor of childhood diseases at Heidelberg University Hospital, Germany.

Børnecancerfonden is in contact with many children with brain tumours who experience severe treatment with serious side-effects. The director of the Foundation hopes that the new consortium will raise the survival rate for children with brain tumours in the same way as many years of targeted investment have done for acute leukaemia.

“Brain tumours are the second-most common diagnosis for Danish children with cancer, and for many years we’ve wanted to do something exceptional for these children and their families.  But brain tumours are an extremely complex area, and making a difference demands considerable financial and research resources. Now we can, and we’re very proud of being able to contribute to establishment of the new childhood brain tumour consortium, so that after all these years we can instill hope in the parents of children with brain tumours and provide better prospects for their children," said Marianne Nielsen, director of Børnecancerfonden.

Work to design the consortium has been underway since 2016, when Børnecancerfonden received a record-high donation from Team Rynkeby, which has made it possible for the foundation to create the necessary basis for improving the childhood brain tumour field. Over the last year, the project description for the childhood brain tumour consortium has been evaluated by international researchers, among others.

For further information, please contact:

Tine Skovmøller
Responsible for communications
M: (+45) 4018 4802 

Linda Svenstrup Munk
Responsible for communications 
Juliane Marie Centre 
M: (+45) 2296 6898

Aarhus University Hospital
Lars Elgård Pedersen
Head of Press
M: (+45) 2479 2436

Danish Collaborative Comprehensive Childhood CNS tumour Consortium 
  • The new Danish Collaborative Comprehensive Childhood CNS tumour Consortium (5C) is a collaboration between researchers from the two Danish childhood cancer departments at Aarhus University Hospital and Rigshospitalet.
  • 5C is being coordinated from the childhood cancer laboratory at Rigshospitalet, Bonkolab, and it is headed by Prof. Kjeld Schmiegelow, professor in childhood cancer and paediatrics.
Participants from Aarhus University Hospital:
  • Henrik Hasle, professor in childhood cancer.
  • Henrik Schrøder, professor in childhood cancer.
  • Christine Dahl, consultant in childhood cancer.
  • Gorm von Oettingen, consultant surgeon in neurosurgery.
  • Morten Høyer, professor in radiotherapy.
Participants from Rigshospitalet:
  • Kjeld Schmiegelow, professor in childhood cancer.
  • Karsten Nysom, consultant in childhood cancer and head of the “Ny medicin til børn med kræft” (new medicine for children with cancer) unit at Rigshospitalet.
  • Astrid Dybdahl Sehested, consultant in childhood cancer.
  • Rene Mathiasen, senior house officer in childhood cancer.
  • Lars Bøgeskov, consultant surgeon in neurosurgery.
  • Jane Skjøth-Rasmussen, consultant surgeon in neurosurgery.
  • Jannick Brennum, professor of neurosurgery.
  • Morten Jørgensen, consultant in radiotherapy.
In addition, a number of other researchers are participating, with expertise within image diagnostics, molecular biology, genetics, neuropsychology, late complications and rehabilitation, bioinformatics, biostatistics and epidemiology.

Brain tumours in children
  • Tumours in the brain and spinal cord are the second-most common type of cancer in children - and the cancer type that costs most lives.
  • Approximately 45 children under 18 are diagnosed with a brain tumour in Denmark every year
  • Four out of five children in Denmark with brain tumours are alive five years after their diagnosis. However, survival varies significantly for the more than 100 different sub-diagnoses. As does the children’s functionality.
  • Brain tumour is the principal diagnosis within childhood cancer with the most late complications. Severe neurological injuries post-surgery or after radiotherapy cause the most serious late complications, e.g. learning difficulties, motor disorders, sight and hearing problems and mental disabilities.
  • Tumours in the brain and spinal cord are usually treated with a combination of chemotherapy, surgery and radiotherapy. The tumours are usually removed completely or partly by the surgery, but there are also tumours that cannot be removed surgically because they are located where the risk of life-threatening injury is too high.
Childhood cancer
  • Approximately 200 children under 18 are diagnosed with cancer in Denmark every year.
  • It is unknown why most of the children have developed cancer. Therefore, there is a need for separate research into childhood cancer. 
  • Cancer is the most common disease-related cause of death for Danish children aged more than 1 year.
  • Børnecancerfonden is an independent foundation established in 1995 by Henrik Hertz, a former consultant at Rigshospitalet.  
  • Børnecancerfonden is the organisation funding most of Danish research into childhood cancer. Since 1995, the foundation has supported Danish childhood cancer research with more that DKK 239 mill.
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