ORIGINAL PAPER Cancer registration data and quality indicators in low and middle income countries: their interpretation and potential use for the improvement of cancer care Maria Paula Curado Æ Lydia Voti Æ Ana Maria Sortino-Rachou Received: 30 June 2008 / Accepted: 9 December 2008 Ó Springer Science+Business Media B.V. 2008 Abstract Cancer registration data plays a major role in the design and monitoring of cancer control activities and policies, and population-based cancer registries (PBCR) are the main source of information. In developed countries, the healthcare infrastructure enables the registration of quality cancer data. In low and middle Income countries (LMIC), where health care facilities are limited or scarce, cancer registration data may be of low quality. The aim of this article is to demonstrate the value of cancer incidence data for LMIC, even when quality is questionable, as well as to attempt to interpret the messages that the quality indicators convey both for cancer registration and the healthcare system. The study of data submitted to the Cancer incidence in five continents, volume nine (CI5-IX) leads to the conclusion that when PBCR from LMIC can- not provide good quality data it may indicate a deficiency that goes above and beyond the registrar ability. The quality control indicators evaluated provide insight on local conditions for cancer diagnosis and care. Low data quality not only signals lack of collaboration among reporting sources and the inability of the registrar to perform quality abstracting, but also points to specific weaknesses of the cancer care system and can guide improvement goals and efforts. Keywords Epidemiology Á Incidence studies Á Cancer Á Low income population Á Registries Introduction Cancer is a major chronic disease, societal burden, and the second leading cause of death worldwide, accounting for 7.6 million (13%) of the world’s 58 million deaths in 2005 [1]. Nowadays, more than 70% of the cancer deaths occur in low and middle income countries (LMIC) and this propor- tion is likely to grow as deaths of cancer continue to rise. The main objective of the cancer registry is to collect, code, and classify all cancers in order to produce statistics on the occurrence of cancer in a defined population, in a specific time period and also to provide a framework for assessing and controlling the impact of cancer on the community [2]. The data produced can monitor cancer incidence trends usually in poor countries [3] and in developed countries, the population-based cancer registries (PBCR) are usually able to make available incidence, trends, follow up of the patients and cancer survival data [4.] Over the last 20 years the information collected by the PBCR expanded and improved and their role widened into becoming an indispensable tool for planning cancer control activities [1]. Now it is recognized that PBCR can measure cancer burden in populations and generate information that can be used for etiological research [5]. Cancer incidence data produced by registries are also a tool for promoting better cancer care when used for planning cancer control policies. As it was described, ‘‘The Cancer registry is an M. P. Curado (&) Á L. Voti Descriptive Epidemiology Production Group, Biostatistics and Epidemiology Cluster, International Agency for Research on Cancer (IARC), 150, Cours Albert Thomas, 69372 Lyon Cedex 08, France e-mail: curadomp@iarc.fr A. M. Sortino-Rachou Hospital 9 de Julho, Rua Peixoto Gomide, 625, Sao Paulo, SP, Brazil e-mail: sortino-rachou@melanoma.com.br 123 Cancer Causes Control DOI 10.1007/s10552-008-9288-5