Abstract

This article illustrates some issues we faced during our experience in conducting an epidemiologic case–control study of inflammatory breast cancer in North Africa. We expect that some of the questions we had to ask in order to address these issues might be helpful to others in setting up epidemiologic studies in developing regions. We describe our experience from different angles including the use of multiple sites to achieve adequate sample size, standardizing diagnosis of disease, identifying cancer cases at the time of diagnosis, control selection procedures, logistics of study implementation, questionnaire development and interviewing, biologic specimens, and procedures for protection of human subjects. We have developed a brief checklist to summarize important issues for conducting future epidemiologic studies in these or similar low- or middle-income countries.

Highlights

  • Designing and conducting epidemiologic studies in developing countries can be very challenging due to lack of research and medical infrastructures at study centers, including personnel trained in epidemiology

  • Several studies have reported that inflammatory breast cancer (IBC) constitutes a larger proportion of breast cancers in North Africa than in the United States [1, 2], the proportion of IBC in some parts of Tunisia appears to be declining [3]

  • Our methods for selecting non-IBC cases were based on the careful evaluation of hospital procedures that we described above and varied depending on the hospital

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Summary

Introduction

Designing and conducting epidemiologic studies in developing countries can be very challenging due to lack of research and medical infrastructures at study centers, including personnel trained in epidemiology In this manuscript, we share our experience in designing and conducting an ongoing epidemiologic case–control study of inflammatory breast cancer (IBC) in North Africa that included a molecular epidemiology component. Several studies have reported that IBC constitutes a larger proportion of breast cancers in North Africa than in the United States [1, 2], the proportion of IBC in some parts of Tunisia appears to be declining [3] This is why we chose to do the case–control study in Egypt, Tunisia, and Morocco. We collected information via questionnaires, medical record review, clinical examination, anthropometric measurements, saliva samples, tumor tissue, and digital photographs of the breast for the cases and questionnaire, anthropometric measurements, and saliva for the controls

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