vom 20.11.2017

The INFORM Registry has become "international"

What is INFORM?
INFORM is a program for children with relapsed or progressive malignancies for which no further standard of care therapy is available. Tumor samples will be analyzed by state-of-the art next-generation sequencing technologies to get a “fingerprint” of each individual tumor. An expert panel weighs the aberrations found for each single patient according to clinical relevance.

Current Status of the Registry:
The INFORM Registry started in the beginning of 2015. Almost 400 children, resp. young adults from 48 German centers within the GPOH (Society for Pediatric Oncology und Hematology) have been registered, analyzed and documented in the meantime. Recruiting of patients is exceeding expectations (Figure 1).
Since June 2016 also international centers may include patients, provided that they received the approval by the INFORM project management. Almost 90 patients form Austria, Australia Finland, the Netherlands, Sweden and Switzerland have been registered and documented in the web-based database in the meantime. More countries are currently under preparation to participate in the INFORM registry in the near future.

Tasks of the Data management of the NCT Trial Center:
The data management serves as helpdesk for national and international users and is responsible for the quality of the web based database. The documentation is regularly checked for plausibility and completeness. If data are missing the treating center will be queried on a timely basis. Results from the registry have been presented regularly on scientific conferences and publications. The data management team supports these activities by providing the descriptive analysis of the current data.

Gained Experiences:
New international centers were smoothly integrated into the existing process flow. The use of a web-based database and the implementation of a bilingual system supported this progress. The data quality was significantly increased by a close monitoring of completeness of documentation. For this reason ad hoc analyses at short notice are available.

More detailed information regarding the INFORM registry is available at the INFORM homepage.