Development of an online cancer data collection and processing tool for population-based cancer registries in a low-resource setting: The CanDCap experience from Golestan, Iran.

BACKGROUND: Golestan Population-based Cancer Registry (GPCR) with more than 15-years experiences developed an in-house online software called Cancer Data Collection and Processing (CanDCap) to improve its data collection operations from the conventional offline method to new online method. We aimed to report the methods and framework that GPCR applied to design and implementation of the CanDCap. METHODS: CanDCap was designed based on International Agency for Research on Cancer (IARC) protocols and standards and according to the GPCR workflow. CanDCap has two parts including a web-based online part for data collection and a windows-based part for data processing consisting of quality control and deduplication of repeated records. Questionnaire for User Interface Satisfaction (QUIS) was used in order to assess user interaction satisfaction. RESULTS: CanDCap was implemented in 2018 and could improve the quality of the GPCR data during its first three years of activity (2018-2020), during which about 9,000 records were registered. The coverage for optional items including national ID, father name, address and telephone number were improved from 23 %, 32 %, 83 % and 82 % in conventional offline method (2015-2017) to 83 %, 81 %, 87 %, and 90 % after using the CanDCap (2018-2020), respectively. The timeliness was also improved from 4 years to 2 years. Overall, user interaction satisfaction was acceptable (7.8 out of 9). CONCLUSION: CanDCap could resulted in improvement in data quality and timeliness of the GPCR as a cancer registry unit with limited resources. It has the potential to be considered as a model for population-based cancer registries in lower-resource settings.

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.