INFORM Registry

INFORM – INdividualized Therapy FORelapsed Malignancies in Childhood

Although current treatment of childhood malignancies results in overall cure rates in the order of 75% with modern multi-modal protocols, relapse from high risk disease remains a tremendous clinical problem. This medical need is being addressed with the INFORM registry „INdividualized Therapy FORelapsed Malignancies in Childhood“. The INFORM consortium is comprised of leading pediatric oncologists from the study groups of the Society for Pediatric Oncology and Hematology (GPOH or the respective national coordinator in case of international patients) and renowned scientists in the field of high-content genomics research.

Search for targets

The concept of the INFORM registry is to biologically characterize tumor samples (collected through routine standard of care biopsies at the time of the current tumor manifestation) for all pediatric patients with relapsed or refractory high risk disease of the 12 most common but also selected rare entities for whom no further standard of care therapy is available. State-of-the-art next-generation sequencing technologies will be applied to get a “fingerprint” of each individual tumor. An expert panel of experienced pediatric oncologists, biologists, bioinformaticians and pharmacologists classifies and weighs the aberrations/targets found for each single patient according to clinical relevance. No therapy recommendation will be given within this registry study, but the molecular data will be made available to the treating physician.


New patients will be registered via a remote data entry system by their local pediatric oncologist. No analyses can be done without this electronic registration. Only patients living in Germany can be enrolled. The treating physician will have access to the molecular information/targets of their patients and carries the full responsibility as to whether and in which way they use these data for therapy decision-making.

Ethics committee approval

The INFORM registry received ethics committee approval from the Heidelberg University ethics committee.


The INFORM registry is financially supported by the German Cancer Consortium (DKTK), the German Cancer Aid (DKH), the German Childhood Cancer Foundation (DKS), the German Cancer Research Center (DKFZ) and “Ein Herz für Kinder”.

Cooperation Partners

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