Cancer Registration

Data obtained by population based cancer registries have a pivotal role in cancer control. Now also available in Spanish and French, this volume, which contains 15 authored chapters and four useful appendices, remains a standard reference for those planning to establish new cancer registries and those keen to adopt recognized methodologies. Information is given on the techniques required to collect, store, analyse and interpret data.

This is a handbook for cancer registries bringing together all recommendations and guidelines that have been prepared so far by the ENCR Working Groups, as well as recommendations prepared by the International Association of Cancer Registries (IACR) and adapted by the Network. Several appendices provide information on the EUROCIM software and databases, the ACCIS project on childhood cancers, automated registration, and structured registry reviews. The complete address list of the ENCR member registries and a list of selected ENCR publications are also included.

A complete training guide and day-to-day reference for personnel working in population-based cancer registries. Firmly rooted in practical experience, the manual aims to provide all the information needed to help personnel exercise good judgement as well as follow standard procedures of abstracting and coding. Explanations of specific tasks are complemented by numerous reference tables and charts, definitions, exercises, questions and answers, model forms, and examples of typical reports and records. Details range from a flow chart for finding cancer cases in hospitals, through exercises for practice in abstracting and coding, to advice on how to interpret ambiguous terms often used by physicians. The manual, which is presented in the form of a loose-leaf binder, is suitable for use by anyone starting to work in a cancer registry, and most especially for the many who arrive without special training in medicine. Chapters provide general information on the symptoms of cancer, methods of detection, and forms of treatment, and offer a step-by-step guide to the location, collection, extraction, and abstracting of data from all relevant hospital departments, emphasizing procedures of case-finding needed to achieve complete registration. Exercises are included to let readers practice abstracting relevant information from a range of typical hospital reports. Coding is covered in the main chapter, which explains how to convert the diagnosis of cancer into coded form, following the rules developed for ICD-10 and ICD-O. Other chapters cover document management, security and confidentiality, and quality control. The manual concludes with a 90-page course designed to facilitate a thorough understanding of the medical terminology commonly used in cancer centres.

The Pros and Cons of Cancer Registration E. Grundmann It may seem strange for somebody to hold a symposium on cancer regis tration and then submit a paper under the heading "The Pros and Cons of Cancer Registration." Indeed, this may be quite amazing to those of my colleagues who have been endeavoring for years or decades to provide a world-wide system of cancer registration. To be quite frank, this is exactly what I intended. Generally speaking, as scientists we are convinced that the work we do is worth while. We are in fact supported in this attitude by pub lic opinion, if one bears in mind that science is future-oriented. It may be said that science is a way for building the future, and that progressive-mindedness is - to use a modern word - "in." Never theless, we may somehow hesitate at this fashionable word. After all, science is not "in" in the way this word is interpreted by the younger generation. Indeed, this younger generation is much too sceptical whenever confronted with anything done by the older generation - and science is pursued primarily by the "establishment." Rather, it is "in" to criticize the system of society and, if possible, to overcome this system, which is responsible not only for many evils, but also for many illnesses.

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This guidance document consists of six chapters that provide technical advice to planners and health specialists in low and middle-income countries wishing to implement and develop Population-based Cancer Registration (PBCR) as information system that inform cancer control policy. This first chapter has placed the need for cancer registration in the context of the rapidly increasing burden from the disease seen worldwide. Chapter 2 describes the characteristics of the different types of cancer registry and the unique functions of PBCRs and their present status worldwide. Chapters 3 and 4 outline the critical steps in planning and developing a PBCR in lower-resource settings, including discussion of the key sources of information required and the minimal standard set of data items that the PBCR should collect. Aspects in the set-up that will help ensure the sustainability of the registry are emphasized, including comments on infrastructure and resource requirements as well as the commitment of stakeholders. Chapter 5 describes the main techniques to evaluate and further enhance the data quality at the PBCR. Chapter 6 provides some advice on reporting the results to the community at large in support of cancer control and thus promoting the increasing utility of the registry.