General Information
Data basis
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Begin of registration (Western Germany) : 1980
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Number of registered patients (1980-2000) : 29,980*)
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Population base 2000 : 13 million*)
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Completeness of registration : approx. 95%
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Since 1991 coverage of Eastern and Western Germany
- Voluntary reporting by the physicians based on informed consent of the children
resp. their parents
*) children below 15 years of age in eastern and western
Germany
Characterization of the registry
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Combination of population-based and hospital-based registry
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Integration of 15 ongoing clinical trials at 12 trial centers
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Long-term follow-up of all registered patients (late effects, second
malignancies)
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Conduct of epidemiological studies
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Routine interviews of the register population as a basis for etiological
studies
Institutional basis
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Located at the Institute for Medical Biostatistics, Epidemiology and Informatics,
(IMBEI), University Mainz
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Financial support by the Federal Ministry of Health (one third), the Ministry of
Labor, Social Affairs and Health of Rhineland-Palatinate (one third) and all German
states together (one third)
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Scientific support by the Society of Pediatric Oncology and Hematology
(GPOH)
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Cooperation of more than 130 hospitals
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