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

Knowledge Server

The knowledge server is a central source for every kind of information from our Competence Network or the field of pediatric oncology that could be of a general or public interest. Its major purpose is vertical cross linking.

Editors of the knowledge server presently are U. Creutzig and R. Herold. Editing is also done for the GPOH newsletter 'The Notices'.

Study Support

Project 'Study Support Group's' tasks are: assistance with the identification and solution of general problems concerning collection, procession and evaluation of trial data; help with the improvement of an exchange of information between trial coordination centers and hospitals. The prototype of a material management database for laboratories and the update of bibliographies on a regular basis are offered as a service to trial coordination centers.

Improving the work of GPOH therapy optimization trials and their participating hospitals is the project's overall objective.

Vertical Cross Linking

With its info package on vertical cross linking the Coordination and Management Group intends to provide up-to-date scientific knowledge and important disease information from the field of pediatric oncology and hematology. Pediatric oncology and hematology is the medical science of cancer and other non-malignant diseases of the blood forming system in children and adolescents. The provision of concentrated information and active information initiatives is intended to reach

• patients and their relatives,
• interested non-professionals,
• scientists from therapeutic and basic research, and
• medical specialists from different fields.

We particularly address doctors attending cured former patients. For these doctors structured information is provided on

• general late effects and the respective precautions,
• individual risks for a patient, and
• individual adaptation of standardized after care algorithms.

Relatives, patients or non-professionals interested in the subject can already find a number of sources providing structured information on pediatric oncology and hematology. An excellent site for children and adolescents with cancer, their siblings, and families is onko-kids.de.

Currently (and in cooperation with the Competence Network's Project I) joint after care algorithms and documentation forms are developed that take the risk of relapse, late toxicity, secondary malignoma, and quality of life into account.

Assistants in Clinical Research and Quality Control (ACRQC)

The Assistants in Clinical Research and Quality Control improve on-time production, the exchange, the volume, and the possibilities of verification of patient related data necessary for diagnosis and treatment. The ACRQC, and the numerous staff members that have been assisting the documentation and material/data logistics for years, do the spadework necessary for further improvements of the situation of children and adolescents suffering from cancer.

ACRQC are active in 27 centers across Germany. They are appointed, supervised, trained, informed and evaluated by the Coordination and Management Group. Their work supports the Network's quality control and clinical research.

Evaluation

Evaluation is part of the Competence Network's scientific supervision. It serves the project's internal guidance and allows measuring the effectiveness of the sponsored activities and projects. Organization and realization lie with the Coordination and Management Group or the respective project managers. Evaluation of the different sub-projects is done in cooperation with numerous partners. A master plan for network internal evaluation has been developed and in use. In December 1999 a survey of the pediatric oncologic hospitals in Germany was performed as a base evaluation of the initial situation. Aspects of cross linking, knowledge transfer, and the use of ACRQC were taken into account. This survey was done in cooperation with WIAD and prognos.