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.

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This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

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.