A change roadmap towards research paradigm in low-resource countries: retinoblastoma model in Egypt

Abstract

Research on childhood diseases represents a great global challenge. This challenge is maximized in both childhood cancer disciplines and developing world. In this paper, we aim at describing our institution experience in starting a structured childhood cancer research program in one of the developing countries in a short time based on philanthropic efforts. We used retinoblastoma as an example for what was conducted in this program. Starting in 2008, this program included improving clinical practice and its related supporting services besides developing new research services that both complement the clinical activities and pave the way towards creating a research foundation in the country. Results included developing hospital standard treatment protocols, developing national clinical trials, joining international consortia for childhood cancers clinical trials, developing data collection tools and real-time analytics, establishing a biobanking facility, and developing highly qualified team for conducting clinical, epidemiologic, and translational research studies. Moreover, this effort resulted in improving both clinical practice and patients' awareness nationally. This model can be used for other startup facilities that aim at finding answers for their national health problems in low-resource setting.

Clinical presentation of retinoblastoma in Alexandria: A step toward earlier diagnosis

“…Other proposed strategies to overcome delay presentation may be using social media for public awareness of retinoblastoma symptoms, screening of children at time of routine vaccination especially for red reflex, improvement of health insurance resources to cover treatment costs, increased training courses of ophthalmologists, improved research and introduction of instruments for diagnosis and treatment. 1 , 11 , 23 , 24 …”

Getting Started in Research: What Registries Can Do for You

“…The founders decided to establish a research department with the core idea of providing measurement tools that would help improve clinical care. It was destined to be the classic research department that one would find in other countries (Alfaar et al 2017b). The key to the initiation of this department was a saying by Peter Drucker, who stated that "You cannot manage what you cannot measure."…”