INFORM registry
Search for targets
The principle of the INFORM registry is to analyze tumor material obtained from routine biopsies as precisely as possible using state-of-the-art molecular genetic methods, regardless of the specific diagnosis, in patients with relapsed or progressive cancer for whom no established treatment options are available. Based on this molecular "fingerprint" of the tumor, an interdisciplinary panel of experts – consisting of experienced pediatric oncologists, bioinformaticians, biologists, and pharmacologists – classifies the identified alterations according to their clinical relevance. The registry does not provide specific therapy recommendations but instead shares the molecular information with the participating centers and treating physicians. These insights can then be utilized by the participating centers and physicians to support individual treatment decisions.
Registration
The registration of a new patient is carried out by the treating pediatric oncologist via a Remote Data Entry System. No examinations can be carried out without this electronic registration. The treating pediatric oncologist has access to the biological information obtained about their patient and independently decides whether and in what form they wish to use it for treatment decisions.
Ethics vote
The Ethics Committee of the University of Heidelberg has given the INFORM register a positive opinion as part of a professional consultation.
Financing
On February 1, 2023, the agreement for special care under Section 140a of the German Social Code, Book V (Selective Contract), came into effect, regulating the cost coverage for INFORM services by certain German statutory health insurance providers.
Patients whose health insurance provider has not (yet) joined the selective contract must either apply for cost coverage from their insurance provider or bear the costs of the INFORM analyses themselves. INFORM is continuously working to gain the participation of additional health insurance providers in the selective contract.
Health insurance companies that have joined the selective contract:
If you have any questions, please contact INFORM (marvin-registrierung@kitz-heidelberg.de / 06221-566913).
As part of the selective contract, the GPOH centers conclude an amendment (Ergänzungsvereinbarung) to their existing contract with INFORM on the extended tasks and remuneration.
GPOH centers that have already signed this contract amendment:
For INFORM's research activities outside the scope of care, e.g. drug screening and maintenance of the INFORM database, the INFORM registry is financially supported by the German Consortium for Translational Cancer Research (DKTK), the German Cancer Aid (DKH), the German Childhood Cancer Foundation (DKS), the German Cancer Research Center (DKFZ), Heidelberg University Hospital, the aid organization "Ein Herz für Kinder", the Federal Ministry of Education and Research (BMBF), the Federal Ministry of Health (BMG), the Ministry of Science, Research and the Arts Baden-Württemberg (MWK BW), the television station RTL and private donors (Scheu family).