STEP Register

Children and adolescents with a malignant disease can usually be treated as part of therapy-optimisation studies, something that has brought about a drastic improvement in cure rates in the past few decades. These studies provide a network set up by experts that offers a standardised diagnostic approach involving reference centres, the possibility of using risk-adjusted therapy, and molecular basic research to enhance understanding of tumour biology and develop new approaches to therapy.

Children and adolescents who have very rare cancers cannot always benefit from these structures since therapy studies do not exist for all cancer types. For very rare cancers, there are therefore considerable deficits in all the areas that are otherwise thought to be fundamental in the success of cancer research in children and adolescents.

The main aim of the STEP registry is to improve the clinical documentation of these particularly rare cancers. It will create a structure that records these diseases and evaluates patient data. It will also enable an exchange of data with reference centres that have experience with these rare cancers, enabling them to provide assistance with diagnosis and therapy decisions. As soon as it becomes apparent that wider-ranging therapy studies can be developed in a national or international context for certain types of cancer, efforts will be made to establish these studies. This is the only way to obtain knowledge about the causes, frequency, medical history and characteristics of the diseases and ultimately to optimise the diagnosis and therapy of rare cancers in childhood and adolescence.

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