Debling D, Spix C, Blettner M, Michaelis J, Kaatsch P
German Childhood Cancer Registry (GCCR) at the Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University of Mainz, Germany.
Klin Padiatr. 2008 Nov-Dec;220(6):371-7. doi: 10.1055/s-0028-1086027. Epub 2008 Oct 23.
With the increasing number of long-term survivors among patients diagnosed with cancer during childhood, questions concerning late effects have become a major research topic. To ascertain late effects, it is necessary to contact former patients. An essential requirement for such studies is a long-term surveillance (LTS) of former childhood cancer patients in their adolescence and their adulthood. The paper describes the role of the German Childhood Cancer Registry (GCCR) in LTS. A cohort of long-term survivors has been built up over the years. The characteristics of this LTS cohort and strategies for further improvement of LTS will be presented.
Since 1980 the GCCR systematically ascertains all malignant neoplasms and benign brain tumours in children under the age of 15 years at diagnosis. Participants are followed up actively by the treating hospitals and the clinical study groups in the first years after diagnosis, and by the GCCR thereafter. Late effects are accessed within the Scientific Society for Paediatric Oncology and Haematology (GPOH) of different groups with different focal points. Those groups are the GCCR (secondary malignant neoplasms), LESS (late effects after chemotherapy), RiSK (late effects after radiotherapy), and the working group on quality of life (quality of life and data on life circumstances). Additionally, the GCCR provides logistics for contacting patients during LTS. The LTS is supported by a recent basic publication ("position paper") by the GPOH. Newly diseased cancer cases are reported to the GCCR very completely. The GCCR contains mainly epidemiological data. Accessorily, the GCCR ascertains a minimum of data for each patient which enables population-based studies involving long-term survivors of childhood cancer.
Out of 37 291 children diagnosed with cancer between 1980 and 2004, 8 896 died (until spring 2007). From those not deceased, 21 987 (77.4%) can be followed up further (i.e. current address is known). For about 70% of the patients in the LTS cohort, follow-up data are available and not older than 5 years. Our experience shows that about 80% of former childhood cancer patients agree to continued data storage at the GCCR, 4% explicitly refuse their consent, the remaining do not answer. LTS for patients with leukemia and lymphomas is particularly complete, whereas for patients with brain tumours it is less complete.
The LTS is considered highly relevant concerning aspects of clinical quality assurance and epidemiological research. The GCCR can guarantee a continuing development and improvement of existing procedures for LTS. The GCCR expects to achieve contacting a high percentage of former childhood cancer patients also in future LTS, even after long periods of time.
随着儿童期诊断为癌症的患者中长期幸存者数量的增加，有关迟发效应的问题已成为一个主要研究课题。为了确定迟发效应，有必要联系以前的患者。此类研究的一项基本要求是对以前的儿童癌症患者在青少年期和成年期进行长期监测（LTS）。本文描述了德国儿童癌症登记处（GCCR）在长期监测中的作用。多年来已建立了一个长期幸存者队列。将介绍该长期监测队列的特征以及进一步改进长期监测的策略。
自1980年以来，GCCR系统地确定了所有15岁以下儿童在诊断时的恶性肿瘤和良性脑肿瘤。诊断后的头几年，由治疗医院和临床研究组对参与者进行积极随访，此后由GCCR进行随访。在不同重点的不同小组的儿科肿瘤学和血液学科学协会（GPOH）内评估迟发效应。这些小组包括GCCR（继发性恶性肿瘤）、LESS（化疗后的迟发效应）、RiSK（放疗后的迟发效应）以及生活质量工作组（生活质量和生活环境数据）。此外，GCCR为长期监测期间联系患者提供后勤支持。长期监测得到了GPOH最近的一份基础出版物（“立场文件”）的支持。新发病的癌症病例非常完整地报告给了GCCR。GCCR主要包含流行病学数据。此外，GCCR为每位患者确定最少的数据，这使得能够开展涉及儿童癌症长期幸存者的基于人群的研究。
在1980年至2004年间诊断为癌症的37291名儿童中，8896人死亡（截至2007年春季）。在未死亡的患者中，21987人（77.4%）可以进一步随访（即已知当前地址）。对于长期监测队列中约70%的患者，随访数据可用且不超过5年。我们的经验表明，约80%的以前的儿童癌症患者同意在GCCR继续存储数据，4%明确拒绝同意，其余未回复。白血病和淋巴瘤患者的长期监测尤其完整，而脑肿瘤患者的长期监测则不太完整。
长期监测在临床质量保证和流行病学研究方面被认为高度相关。GCCR可以保证长期监测现有程序的持续发展和改进。GCCR预计在未来的长期监测中，即使经过很长时间，也能与高比例的以前的儿童癌症患者取得联系。
