INFORM Registry
Author: Julia Dobke, Last modification: 2026/07/09 https://kinderkrebsinfo.de/doi/e140411
| INFORM Registry | INFORM – – INdividualized therapy FOr high-Risk childhood Malignancies |
|---|---|
| Disease | Refractory/relapsed/progressive: ALL-HR, ALL post-SCT, AML, CWS / rhabdomyosarcoma, ependymoma and medulloblastoma, ewing sarcoma, high grade glioma (incl. DIPG), neuroblastoma, NHL osteosarcoma, rhabdoid tumors, “other” |
| Type | Registry |
| Rationale / Objectives |
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“.
Primary objectives
|
| Therapy / Study arms |
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. This molecular information should be available at the INFORM laboratory within approximately four weeks of receipt of the sample and the required documentation. 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. |
| Inclusion Criteria |
Inclusion criteria for the registry population are relapsed/progressive or refractory diagnoses of ALL-HR, ALL Post-SCT, AML, rhabdoid tumor, ependymoma, medulloblastoma, ewingsarcoma, high grade glioma, high risk neuroblastoma, non-hodgkin lymphoma, osteosarcoma and rhabdomyosarcoma in case of no established curative treatment. |
| Status | Start: 19/01/2015, Continuation as a registry since 2019 |
| Principal Investigator | Prof. Dr. med. Olaf Witt |
| INFORM_info@dkfz.de | |
| URL | https://www.dkfz.de/forschung/inform |
| Contact |
KiTZ Clinical Trial Unit |
| Participants | GPOH hospitals ans international hospitals |
| Weitere Informationen | status February 2012 |