Strategy for long-term surveillance at the German Childhood Cancer Registry - an update.
Klin Padiatr
; 223(3): 159-64, 2011 May.
Article
en En
| MEDLINE
| ID: mdl-21472636
ABSTRACT
BACKGROUND:
The objective of this paper is to provide information about the quality (e.g. completeness, response) of long-term surveillance in German paediatric oncology and haematology based on the structures implemented by the German Childhood Cancer Registry (GCCR).METHODS:
The GCCR contacts parents or patients to collect and update information on a minimal set of follow-up health status data (e.g. late relapses, subsequent neoplasms, current address) and exchanges this information regularly with the appropriate clinical trials.RESULTS:
Between 2006 and 2010, GCCR approached a total of about 20,000 patients (contact at the age of 16 years, inquiry concerning the health status) in the context of long-term surveillance. 11,000 addresses of former patients had to be researched via municipal registrar's offices. The response rates ranged from 56% to 68%, the research in municipal offices provided 93-96% valid addresses. Of 46,115 patients diagnosed between 1980 and 2009, 25,283 are in long-term surveillance in 2010.DISCUSSION:
Long-term surveillance requires considerable logistic effort at GCCR and requires that thousands of letters be mailed each year in order to ensure regularly updated information. Long-term surveillance is indispensable for a better understanding of late effects, subsequent neoplasms and quality of life of former childhood cancer patients.
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Sistema de Registros
/
Vigilancia de la Población
/
Sobrevivientes
/
Neoplasias
Tipo de estudio:
Etiology_studies
/
Incidence_studies
/
Observational_studies
/
Prevalence_studies
/
Risk_factors_studies
/
Screening_studies
Aspecto:
Patient_preference
País/Región como asunto:
Europa
Idioma:
En
Revista:
Klin Padiatr
Año:
2011
Tipo del documento:
Article
País de afiliación:
Alemania