Recurrent tumours or tumours that have progressed under therapy with a diagnosis of ALL-HR, ALL post-SCT, AML, rhabdoid tumours, ependymoma, medulloblastoma, Ewing's sarcoma, high-grade glioma, high-risk neuroblastoma, non-Hodgkin's lymphoma, osteosarcoma and soft tissue sarcoma. Primary disease of a high-grade glioma (incl. DIPG), a specific soft tissue sarcoma or ETMR without a curative treatment option. In exceptional cases, ‘other’ paediatric refractory or progressive/relapsed entities, including rare tumour diseases, can be included in the registry after consultation with the INFORM Trial Office (and in the case of a rare tumour disease with the GPOH STEP Registry, in the case of nephroblastoma, hepatoblastoma, retinoblastoma, malignant endocrine tumours or germ cell tumours with the respective GPOH study group).
The principle of the INFORM programme is to characterise tumour samples obtained from routine biopsies using state-of-the-art molecular genetic methods as precisely as possible today, regardless of the diagnosis, in patients with relapse or progression of the malignant disease for whom no established treatment concept is available. From such a ‘fingerprint’ of the tumour, a panel of experts (experienced paediatric oncologists, bioinformaticians, biologists, pharmacologists) will then classify the changes found for each individual patient according to clinical relevance. This molecular information should be available in less than 4 weeks. Within the framework of the registry, no therapy recommendations are made, only the molecular information - the treating physician has access to the biological information obtained on his patient and bears full responsibility as to whether and in what form he uses it for his therapy decision.
