Author: Dr. med. Ralf Herold, Last modification: 2004/06/15

Prerequisites for the Coordination and Management Group's Work

Major precondition for optimizing diagnostic procedures and therapy is a close cooperation and communication between the institution attending the patient, the trial groups, and the scientists doing the basic research. The cooperation between hospitals and trial coordination centers that developed in the context of multi center therapy trials in pediatric oncology, is relatively good, while the accompanying basic research is not coordinated sufficiently.

However, some essential preconditions concerning technical standards and human resources, that are necessary for a sufficient flow of information and a feedback between the involved institutions, have not been met. This compromises generation of data for research and therapy optimization and delays an implementation of research results. Pharmaceutical research or research on acute and long term toxicity for instance is currently only possible under harsh restrictions that cause long delay. A coordinated realization of projects on molecular genetic bases of leukemia and malignant tumors and nationwide therapeutic research is essential for an identification of subtypes with different biological attributes and prognoses.

A second opinion in diagnostic imaging is very important for deciding about which type and intensity of a local therapy of solid tumors and lymphoma to chose. Because of the expenses for copies and shipment, up-to-date information is often not available to doctors confronted with the necessity to make those decisions. Most hospitals and research institutions make use of computer based documentation and evaluation systems for procession and exchange of information. An exchange of information is nevertheless hard, if not impossible, due to the lack of a common standard of terms and an incompatibility of the software.

An exchange of information among hospitals, trial centers, reference labs, and research institutions is often delayed because documentation systems are paper based or a paper based documentation is done parallel to an electronic one. This impairs the data quality and raises the work load. Especially comprehensive evaluations of diseases are barely possible.

Goals

The Competence Network and it's Coordination and Management Group aim at eliminating the deficiencies described above; each project is concerned with different aspects of necessary improvements concerning the research and general work situation (coordination and cross linking, basic research, clinical research).

The final goal is to establish an efficienct research cooperation by cross linking hospitals, centralized instituations, and research laboratories in pediatric oncology. Development and improvement of hospital infrastructure is promoted to finally allow comprehensive and cross instituaional research projects on topics such as:

Molecular genetic bases of pediatric oncologic diseases

Optimization of therapy by testing and development of new therapeutic methods which special regard to the posibilities of molecular genetic diagnostics

Evaluation of acute and long term toxicity and quality of life for an improvement of drug safety and feedback for future therapies.

Establishment of new, cross network structures for an improvement of the information flow and the cooperation and interaction between research partners. This includes centralized research coordination, nationwide introduction of computer based applications and telemedical procedures, optimization of material logistics and provision of information and knowledge on realization of vertical cross linking.

To improve the research work accompanying trials the Coordination and Management Group introduced the Assistants in Clinical Research and Quality Control (ACRQC). Instruction, training, supervision, and evaluation of the ACRQC are a central project for the Coordination and Management Group.

Enhancing the flow of information and knowledge about pediatric oncologic diseases among doctors, scientist, patients and relatives will result in an improvement of the care for children and adolescents suffering from cancer.