INFORM – Information for parents

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.

 

What happens to any genetic changes found?

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 contact: INFORM_info(at)dkfz.de