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为国家提供儿童肿瘤的发病率、死亡率、患病率及生存率等指标，以及诊断信息、治疗方法、效果评价、不良反应、生存信息等内容，掌握我国儿童肿瘤的疾病负担与变化趋势。
为国家提供区域内诊疗机构儿童肿瘤就诊患儿的概况和动态，向国家提出合理调配儿童肿瘤医疗资源如人员、病床和相关设施的依据与建议，提升区域内儿童肿瘤诊疗、护理的可及性。
为国家提供诊疗机构对肿瘤患儿的诊治和护理状况、水平及效果；对医院开展的新技术、新方法进行追踪随访，科学评估其开展情况及效果，为监测和评价儿童肿瘤控制措施的效果提供基本依据。
为儿童肿瘤临床数据分析研究、大型队列研究、早诊早治工作等奠定基础；为儿童肿瘤病因、临床诊疗、预后、预防等研究提供数据基础；为制定儿童肿瘤规范化诊疗指南、专科人才培养及继续教育方案提供数据支撑。
Cancer is a serious disease that greatly threatens Chinese people’s health, and it is currently the leading cause of death among the Chinese people. The Central Committee of the Communist Party of China and the State Council attach great importance to cancer prevention and control, on which General Secretary Xi Jinping has made important instructions and requirement. Premier Li Keqiang pointed out in the 2019 Government Work Report: tens of thousands of families in China have been affected by cancer. It is necessary to carry out cancer prevention and screening, early diagnosis and early treatment, and scientific research to tackle relevant critical problems. It was proposed at the executive meeting of the State Council in February 2019 concerning the vital work of cancer prevention and treatment:“it is necessary to strengthen early screening and early diagnosis and treatment of cancer, establish and improve the system of diagnosis and treatment of cancer, and strengthen the protection of drugs for prevention and treatment of cancer. The next step is to improve the cancer registration and reporting system, speed up the promotion of early screening and early diagnosis and treatment of cancer, enhance the professional capacity at the primary level, and increase the publicity of anti-cancer science. Particular emphasis is placed on promoting pediatric oncology, strengthening the allocation of relevant professional human resources, and comprehensively improving the ability of various disciplines related to cancer diagnosis and treatment.”
On June 12, 2019, the National Health Commission (hereinafter referred to as the NHC) approved the National Center for Children’s Health (Beijing),Beijing Children’s Hospital, Capital Medical University to establish the National Center for Pediatric Cancer Surveillance (hereinafter referred to as the NCPCS) that serves to build a children’s cancer surveillance system and carry out national child cancer surveillance. On July 31, 2019, the NHC and other five ministries jointly issued The Notice on the Medical Treatment and Security Management of Children ’ s Hematological Diseases and Cancers (Medical Letter No.50 of the NHC [2019]), clearly put forward“improve the diagnostics and therapeutics, improve the management and treatment level; improve the drug supply and comprehensive security system.”On September 17, 2019, the General Office of the NHC issued The Circular on the Registration and Management of Diagnostic and Therapeutic Information of Children ’ s Hematological Diseases and Cancers (Medical Letter No. 737 of the NHC [2019]), which proposed that“great attention should be paid to the work of information registration. The surveillance platform’s docking with the universal health information platform and medical institutions’hospital information system should be actively promoted.”On January 14, 2020, the General Office of the NHC issued The Notice on Doing a Better Job in the Treatment and Management of Major Pediatric Diseases (Medical Letter No. 22 of the NHC [2020]), clearly proposing to“continue to promote information registration, clarify the main body of responsibility for information registration, and strengthen the use of registration data and information.”
The national pediatric cancer surveillance is hospital-based, with pediatric cancer medical institutions as pediatric cancer surveillance sites (hereinafter referred to as the surveillance sites). The surveillance sites directly report to the NCPCS for two-level case information registration. A national children’s cancer surveillance database is gradually established, and a mechanism is improved for information exchange and sharing of the cause of death and cancer, together with other related monitoring systems, thus providing comprehensive, scientific, and accurate data support for national children’s cancer prevention and control work (Figure 1-2-1).
To provide the country with indicators such as incidence, mortality, prevalence, and survival rate of children with cancer, as well as diagnostic information, therapeutic methods, effect evaluation, adverse reactions, survival information, and help understand the disease burden and changing trends of pediatric cancers in China.
To provide the general situation and developments of children with cancer of medical institutions in the region, to put forward the basis and suggestions for the rational medical resources allocation against pediatric cancer, such as medical personnel, hospital beds, and other related facilities, and to improve the accessibility of cancer diagnosis, treatment and care for children in the region.
To provide the diagnosis, treatment and nursing situation, quality and effect of diagnosis and treatment institutions for children with cancer; to follow up the new technologies and methods carried out by hospitals, scientifically evaluate their development and effect, and provide evidence for monitoring and evaluating the effect of control measures of pediatric cancer.
To lay a foundation for clinical data analysis, large-scale cohort study, as well as early diagnosis and early treatment of pediatric cancer, and to provide data for etiology, clinical diagnosis, treatment, prognosis and prevention of pediatric cancer; to provide data support for the formulation of standardized guidelines for diagnosis and treatment of pediatric cancer, training for specialized talents, and continuing education programs.