Retinoblastoma Clinical Research in Egypt, 5 years experience.

Alfaar, A. S., Nour R., Kamal M., Bakry M. S., & Ezzat S. (2013).  Retinoblastoma Clinical Research in Egypt, 5 years experience.. International Society of Genetic Eye Diseases and Retinoblastoma meeting..


Introduction and purpose: Institution-lead clinical research is a systematic effort for understanding diseases and its management in relation to local situation and needs. In Egypt, Children’s Cancer Hospital Egypt has initiated a clinical research program that aims at standardising treatment protocols for different diseases including Retinoblastoma. The aim of this study is to present the steps we’ve conducted, specific challenges we’ve faced, key performance indicators that we’ve designed and achievements we have accomplished. Methods: During the evolution of this program we’ve tracked events and progress in the retinoblastoma program over an online shared application. This was reported on observational basis by research team for practices of clinical, pharmacy, nursing and other supporting teams beside research team itself. Retinoblastoma Research Team has used shared online documents for facilitating collaborative building of reports. Results: Between July 2007 and and July 2012 we’ve adopted 5 treatment protocols. We’ve enrolled 250 patients over those protocols. Follow-up of challenges revealed different factors related to nature of the retinoblastoma disease and management, knowledge of clinical and research teams, settings in developing countries and factors related to registration and follow-up of huge numbers of patients. Physicians were engaged in the program through weekly discussions and tumour board meetings. We’ve implemented a tailored training program for nurses and pharmacists about the disease and treatment protocols. The research team has developed an online protocols portal to disseminate the latest versions of treatment roadmaps to clinical management teams. We succeeded to integrate a real-time follow-up system that reports full picture of the performance of retinoblastoma patients. Significance: This model represents an example for facilitating the transformation into clinical research in developing countries with the aid of international best practices and information technology tools. The paper represents a blueprint for other institutions in low resource countries to integrate its unique knowledge about the disease and its response into practice.