INFORM

Although current treatment of childhood malignancies results in overall cure rates in the order of 75% with modern multi-modal treatment protocols, relapses from high risk disease remains a tremendous clinical problem. Only a small proportion of patients with relapses (about 10%) can be cured. This medical need will be addressed with the INFORM project „INdividualized Therapy FOr Relapsed Malignancies in Childhood“. The INFORM consortium constitutes leading pediatric oncologists of study groups of the Society for Pediatric Oncology und Hematology (GPOH) and renowned scientists in the field of high content genomics research.

The concept of the INFORM-program is to biologically characterize tumor samples (collected through routine standard of care biopsies) for all pediatric patients with relapsed or refractory high risk disease for which no further standard of care therapy is available, independently of histological diagnosis. 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, bioinformaticians, biologists and pharmacologists classifies and weighs the aberrations/targets found for each single patient according to clinical relevance. These molecular targets shall be available in less than 4 weeks and will be entered in the central database. No therapy recommendation will be given within this registry study. The treating physician has access to the molecular information/targets of his patients and carries the full responsibility as to whether and in which way he uses these data for his therapy decision making. 260 patients shall be included over a time period of two years.

The intention of the INFORM Registry is to establish the technical, structural and information basis for a future clinical trial (AMG) for personalized pediatric oncology.