The registry of childhood malignancies in the F.R.G. is a combination of a population-based
and hospital-based cancer registry. A large amount of the collected data originates
from multicenter clinical trials which are integrated into the documentation system
of the cancer registry. The paper describes the information flow and the system of
data storage which consists of a central database on a departmental system at the
registry and of several coordinated peripheral databases on microcomputers at the
trial centers. Practical experience shows an increased availability and validity of
the data in the registry since the implementation of the system. Aspects of data integrity
and security are discussed. Although the system was designed according to specific
demands of the registry, it may serve as a model for similar tasks of cooperative
documentation and information exchange.
Key-Words
Cancer Registries - Clinical Trials - Databases - Microcomputers - Data Privacy -
Epidemiology