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INFORM-Registry

INFORM Registry

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.

Registration

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. Patients can be enrolled from GPOH centers in Germany and international partners of the INFORM consortium. For details, please see In-/Exclusion criteria. 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

The INFORM registry received a positive opinion from the Heidelberg University ethics committee.

Funding

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), the Heidelberg University Hospital, the aid organization "Ein Herz für Kinder", the Federal Ministry of Education and Research (BMBF), the Federal Ministry of Health (BMG), the Ministry of Science, Research and the Arts of the State of Baden-Württemberg (MWK BW), RTL television and private donors (family Scheu).

Cooperation Partners

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