Rare tumours and other malignant diseases


Rare tumours and other diseases

In Germany, very rare tumours include diseases that are diagnosed with a maximum of ten times per year and also those that are not being treated according to any trials or registries. Overall, this applies to about 5 % of all children and adolescents who have been diagnosed with a cancer. The following pages will provide you with information on rare tumours and other very rare malignant childhood diseases, such as throat and laryngeal cancer or cancer of the pancreas or the salivary glands.

Information for patients or family members

Here, you will find information on rare tumours in children and teenagers. The work on these pages is in progress.

Care for rare cancers

GPOH Paediatric Rare Tumour Group

A working group specialised on very rare tumours in children and adolescents, the members of which form part of the So­cie­ty for Pa­ed­ia­tric On­co­lo­gy and Hae­ma­to­lo­gy (GPOH), has built up a network in order to study and thus better understand and manage rare childhood tumours. In 2012, a registry for patients with rare tumours (called STEP) was opened to furher intensify the working group's studies by registration of all rare tumour cases in Germany. More about the STEP working group and the registry (in German)

Clinical Trials

Almost all Western European
children and teenagers with cancer are treated according to standardised protocols based on clinical trials or registries. Currently active trials / registries:

Literature and work material

Treatment guidelines, trial literature, checklists, and further information on the subject:

For more reading

you will find some additional in­for­ma­ti­on on rare diseases pro­vi­ded by ex­ter­nal sour­ces he­re: