Background: Children’s Cancer Hospital -Egypt was established to serve as the country major referral center. Within 6 years the hospital has received 13,865 patients with cancer among 19,744 screened ones. With this rapidly growing number the hospital looked for developing a reliable method for examining the quality of care and supporting health services research as an emerging field in the country. The aim of this paper is to describe the role of integrating several databases in providing a 360 view for healthcare picture. Methods: We have developed an online cancer registry database using RedCap data capture system to gather patients data from different sources. This database was integrated with the electronic medical records to share new patients data instantaneously. Two nurses were trained to curate the database daily and act as human quality control gateway. Cancer registry provided data about 19,927 patients were examined between 2007 and 2013. The second aspect was provided by digitizing and Optical Character Recognition of 12,573 pathology paper-based reports. Pathology reports were analysed electronically to extract dates, initial and final diagnoses, gross and microscopic pictures and markers used for diagnosis. A third aspect was added to the model by mining Radiology Information System database to extract 258,632 studies for all patients. Radiological studies were organized to show the type of investigation, time needed and outcome. Results: A unified comprehensive new database was developed showing uncountable number of quality of care indices and correlations between different initial and final timepoints. Those indicators included delay of diagnosis, reporting and difference in outcomes correlated with epidemiological aspects. The time used to develop this database was two weeks in the first time. A standard operating procedures was developed to decrease time during future updates. Conclusions: Accelerated pathway to research can be acquired in any settings including unprivileged low-middle income countries via structured reporting, integration between different databases and using simple information technology skills.

Purpose: Our aim is to study the incidence of different ocular, orbital and optic nerve tumors in childhood age group (between 0-18 years old) in the largest Egyptian pediatric oncology referral center and correlate the features of each disease and its survival outcomes.

Methods: Institutional cancer registry database was reviewed for patients who presented with orbital tumors as a primary site of involvement between July 2007 and November 2013. REDCap (Research Electronic Data Capture) system was used for data collection and organization. Integration between clinical information system and RedCap was established for real-time registry updating. Relevant ICD-O-3 topography codes were used to identify the sites. Data were presented in terms of frequencies and percentages. Other demographic properties were presented. Survival was demonstrated using kaplan-meier curves.

Results: Among 7277 patients presented with different childhood tumors 425 had the mentioned lesions. Males were affected more than females. Retinoblastoma, Astrocytomas of optic nerve and Rhabdomyosarcoma of orbit were the most frequent tumors. Mean age of retinoblastoma cases was 1.4 years while it was higher in other diseases except germ cell tumors. We've presented correlations of our findings with the current Egyptian population-based cancer registry and previous results from Cancer in five continents report. Overall Survival of Retinoblastoma was 95.4% while it was better in Germ cell tumors and less in all other tumor categories. Orbital bones masses were hard to identify due to the broad classification in current ICD-O topography coding.

Conclusions: Childhood orbital tumors distribution was similar to international publications except increased incidence of orbital lymphomas. Special attention should be paid to updating the ICD-O classification system to present different skull bones

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.

similar patterns that had failed: a kind of negative precedent studies.

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