Building cancer registries in a lower resource setting: The 10-year experience of Golestan, Northern Iran

Introduction: The Golestan population-based cancer registry (GPCR) was established in Golestan province, Northern Iran, within the Asian belt with predominance of upper-gastrointestinal cancers. We aimed to present the experiences of the registry in a resource-limited setting over the 10 years since its inception (2004-2013).

Methods: The GPCR was established as a research project to enable sustainable funding. A clear plan was developed for use of the GPCR data. New primary cancers were registered based on international standards, indices of data quality were routinely assessed and age-standardized incidence rates (ASR) per 100,000 person-years calculated using IARC's CanReg-5 software.

Results: Overall, 19807 new cancer cases were registered during the study period, an average of 1981 cases per annum, with overall ASR of 175.0 and 142.4 in males and females, respectively. The GPCR data suggested gastrointestinal and breast cancers as the most common malignancies in Golestan province. We observed increasing incidence rates of breast and colorectal cancers but declining trends of esophageal cancer. Overall, indices of data quality were within acceptable ranges.

Conclusions: The GPCR data have been included in IARC's Cancer Incidence in Five Continents series, were used in 21 research projects, and published as 30 research papers. The key ingredients for the successful establishment and maintenance of the GPCR included sustainable sources of funding, a clear action plan for the use of data as well as stakeholder cooperation across all areas of the registration. The GPCR may be considered as a model for planning population-based cancer registries in lesser-resourced settings.