title: Measuring the effect of improvement in methodological techniques on data collection in the Gharbiah population-based cancer registry in Egypt: Implications for other Low- and Middle-Income Countries.
abstract: The purpose of this study was to describe and quantify procedures and methods that maximized the efficiency of the Gharbiah Cancer Registry (GPCR), the only population-based cancer registry in Egypt. The procedures and measures included a locally-developed software program to translate names from Arabic to English, a new national ID number for demographic and occupational information, and linkage of cancer cases to new electronic mortality records of the Ministry of Health. Data was compiled from the 34,058 cases from the registry for the years 1999-2007. Cases and registry variables about demographic and clinical information were reviewed by year to assess trends associated with each new method or procedure during the study period. The introduction of the name translation software in conjunction with other demographic variables increased the identification of detected duplicates from 23.4% to 78.1%. Use of the national ID increased the proportion of cases with occupation information from 27% to 89%. Records with complete mortality information increased from 18% to 43%. Proportion of cases that came from death certificate only, decreased from 9.8% to 4.7%. Overall, the study revealed that introducing and utilizing local and culture-specific methodological changes, software, and electronic non-cancer databases had a significant impact on data quality and completeness. This study may have translational implications for improving the quality of cancer registries in LMICs considering the emerging advances in electronic databases and utilization of health software and computerization of data.
authors.affiliation: Department of Epidemiology, College of Public Health, University of Nebraska Medical Center, Omaha, NE 68198-4395, U.S.A.
authors.forename: Brittney L
authors.initials: BL
authors.lastname: Smith
authors.affiliation: Gharbiah Cancer Society, Tanta, Egypt.
authors.forename: Mohamed
authors.initials: M
authors.lastname: Ramadan
authors.affiliation: Department of Epidemiology, College of Public Health, University of Nebraska Medical Center, Omaha, NE 68198-4395, U.S.A.
authors.forename: Brittany
authors.initials: B
authors.lastname: Corley
authors.affiliation: Gharbiah Cancer Society, Tanta, Egypt.
authors.forename: Ahmed
authors.initials: A
authors.lastname: Hablas
authors.affiliation: Gharbiah Cancer Society, Tanta, Egypt.
authors.forename: Ibrahim A
authors.initials: IA
authors.lastname: Seifeldein
authors.affiliation: Department of Epidemiology, College of Public Health, University of Nebraska Medical Center, Omaha, NE 68198-4395, U.S.A. Electronic address: amr.soliman@unmc.edu.
authors.forename: Amr S
authors.initials: AS
authors.lastname: Soliman
mesh_terms: D016208:Databases, Factual; D004534:Egypt / Q000453:epidemiology; D006801:Humans; D009369:Neoplasms / Q000453:epidemiology*; D012042:Registries
keywords: Cancer registration; Data collection; Egypt; Low- and Middle-Income Countries; Methods; Population-based