INFORM – Registry

The concept

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.

If you have any questions, please contact: INFORM_info(at)DKFZ.de

 

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) and “Ein Herz für Kinder”.