INdividualized Therapy FOr Relapsed Malignancies in Childhood (INFORM)

Although malignant diseases in childhood and adolescence can now be cured by about 80% with modern treatment protocols, relapses and the progression of high-risk diseases remain a major clinical challenge. There are no established treatment options for these cases. The INFORM registry study will help develop new treatment options for children and adolescents who have relapsed after initial therapy. For this purpose, the tumors of patients who have relapsed, and for whom there are no longer established treatment concepts available, are molecularly characterized as accurately as possible.

If you have further questions concerning the INFORM registry study, please contact: INFORM_info(at)

The concept of the INFORM program is to biologically characterize tumor specimens from routine biopsies of pediatric patients with relapsed or refractory high-risk disease for which no other standard therapy exists, regardless of histological diagnosis. State-of-the-art sequencing technologies are used to gain a "fingerprint" of each individual tumor. An expert panel – consisting of experienced pediatric oncologists, bioinformaticians, biologists and pharmacologists - classifies and assesses the changes and targets that could be found in each patient in terms of their clinical relevance. These molecular targets should be available in less than 4 weeks and entered into a centralized database. This study registry does not provide a therapy recommendation. The attending physician has access to his patient's molecular information / targets and is fully responsible for whether and how the data is used for a therapy decision. The goal is to include 260 patients from Germany and other international patients over a period of 2 years.

The purpose of the INFORM registry is to establish a technical, structural and genetic information base for future clinical trials (AMG) in the field of personalized pediatric oncology. More information can be found here. If you have any questions, please contact: INFORM_info(at)

The INFORM consortium consists of leading physicians and scientists from the field of genomics, as well as pediatric oncology study groups of the pediatric oncology and hematology society (GPOH).


  • Prof. Dr. med. Olaf Witt,  KiTZ Director translational Program

    Coordinator of the INFORM Registry Study and INFORM2
    Head of the division Clinical Cooperation Unit Pediatric Oncology, DKFZ
    Head of KiTZ Clinical Trial Unit (ZIPO) and Brain Tumors
    Deputy Chief of the Department of Pediatric Oncology, Hematology Immunology and Pulmonology, (Pediatrics III), Heidelberg University Hospital

  • Prof. Dr. med. Stefan Pfister,  KiTZ Director Preclinical Program

    Coordinator INFORM program
    Head of the division Pediatric Neurooncology, DKFZ
    Senior Physician for Pediatric Oncology, Hematology, Immunology and Pulmonology, (Pediatrics III), Heidelberg University Hospital

  • David T. W. Jones, PhD
    Coordinator molecular diagnostics
    Group Leader of Pediatric Glioma Research Group, DKFZ

  • Prof. Dr. Peter Lichter
    Coordinator OMICs workflows
    Head of the division Molecular Diagnostics, DKFZ

  • Prof. Dr. med. Uta Dirksen
    Coordinator participating GPOH groups

    Vice Director Pediatrics III, Oncology, Hematology, Immunology, Cardiology, Pulmonology, West German Cancer Centre, Essen


Anyone who is eligible to participate in the INFORM register will be identified by the attending children's oncologist. Inclusion criteria include tumor progression or progressive diseasse with the diagnosis of ALL-HR, ALL Post-SCT, AML, rhabdoid tumor, ependymoma, medulloblastoma, ewing-sarcoma, high grade glioma, high risk neuroblastoma, non-hodgkin lymphoma, osteosarcoma, soft tissue sarcoma, nephroblastoma, retinoblastoma, malignant endocrine tumor or germ cell tumor. Patients with primary diagnosis high-grade glioma (incl. DIPG), primary diagnosis soft tissue sarcoma or ETMR, for which no curative treatment is established, may also be enrolled. Exceptionally, "other" pediatric refractory or progressive/relapsed entities including rare tumor diseases may be registered following consultation with the INFORM trial office (and in case of rare tumor diseases with the GPOH STEP) before enrollment. Patients are between 0 and 40 years of age and were treated as part of their primary diagnosis in a treatment protocol from the Society for Pediatric Oncology and Hematology (GPOH) or an equivalent treatment protocol. Exceptions may be HGG (including DIPG), specific soft tissue sarcomas, ETMR and rare tumors. Patients may be admitted until the age of 40, but the primary diagnosis must be made before the age of 21. In addition, given the duration of the analysis, only patients who have a life expectancy of at least 3 months and are in good general condition can participate. The tumor material is obtained as part of the routine care of patients.

Study participation

Patients (and / or parents) are informed by their attending child oncologist via the INFORM registry and sign the consent form. After reviewing the inclusion and exclusion criteria, the treating oncologist can electronically register the patient with the INFORM register. Without this electronic application, no examinations can be performed. Only a pediatric oncologist can register a patient with the INFORM register.

A panel of experts (experienced children's oncologists, bioinformaticians, biologists, pharmacologists) classify the changes found according to clinical relevance for each individual patient. The register does not provide any therapy recommendations, only the molecular information. The pediatric oncologist has access to the acquired biological information of the patient and can decide independently whether and how it is used for the therapeutic decision.

Please direct your inquiries to the following contactINFORM_info(at)