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: To evaluate the success of ocular survival following chemoreduction and efficency of local treatment in the management of Retinoblastoma in the first multidisciplinary system for the treatment of childhood cancer in egypt Methods: A total number of 262 retinoblastomas cases managed between July 2007 to December 2012 with six cycles of chemoreduction (vincristine, etoposide, and carboplatin (COG protocols). The tumors were then managed with local treatment alone (group A) or chemoreduction combined with , cryotherapy or Diode laser (group B and C) and some cases of group D. In addition to enucleation for group E and advanced cases . Results: Of 262 retinoblastomas cases , (0.9%) were in group A, (8.4%) in group B, (11.7%) in group C, (44.4%) in group D,and (33.6) in group E. The mean age at presentation is 21.17 months .Bilateral affection was in 43% and unilateral in 57%. Family history of cancer was 11% and consangunity was positive in 19%. Extraocular involvement was in 18% of cases . Incidence of ocular survival for bilateral cases was 95% in group A ,80% in group B 45% in group C and 35% in group D ,while in unilateral cases it was 80%in group B ,50% in group C ,15% in group D . Conclusions: There is no doubt that the application of different treatment modalities among a multidisciplinary system in the treatment of retinoblastoma in the cancer children hospital gives a very good percentage of success despite the relatively late presentation and the higher incidence of advanced cases Financial disclosure: There is no financial disclosure Paper

Introduction / Purpose: Retinoblastoma is the most common intraocular malignancy of infancy and early childhood. In developing countries the decreased access to health care poses a major challenge and increases the possibility of extra-ocular dissemination. Surgical pathological examination aim at discerning histopathological features that pose a higher risk for extraocular spread and are indicative of a need for adjuvant therapy. Our aim is to study the prevalence of histopathological high risk features amongst the enucleated eyes, measure the Event- free survival (EFS) in those patients and compare the EFS in two groups 1) the ones who received adjuvant chemotherapy, 2) the ones who did not. Materials & Methods: We retrospectively analyzed patients who were presented to Children’s Cancer Hospital - Egypt 57357 between July 2007 and April 2012. Only unilateral cases were included in the study. Pathological examination of the enucleated eyes was conducted for all cases. Pathologists were trained for detection of high risk features. Designated high risk features included massive choroidal invasion, retrolaminar invasion or any degree of combined choroidal with optic nerve invasion. Patients were followed up till June 2013. Results: During the period from July 2007 to end of April 2012 a total of 219 patients presented to CCHE-57357 with retinoblastoma. Only 40 patients had unilateral retinoblastoma and had undergone enucleation and their pathology reports revealed high risk features.Three patients have been histopathologically diagnosed with extra-ocular retinoblastoma. Conclusions / Significance: Introducing adjuvant chemotherapy for our cases has improved event-free survival. Only followup with no adjuvant treatment is sufficient for patients with no high risk features. Training pathologists in developing countries on detection of high risk features is a cost-effective measure for improving retinoblastoma integrated management.

Introduction / Purpose: Retinoblastoma is the most common intra-ocular tumour of childhood. Radiotherapy and chemotherapy has improved survival for the disease over the last 40 years. Looking for prognostic criteria is one of the major research areas that inspires disease management teams all-over the world. Many protocols were designed over the years to correlate the presence of certain pathological and/or molecular features and prognosis of the disease. Children’s Cancer Hospital Egypt 57357 (CCHE) is a new cancer center in Egypt that serves about 25-40% of the pediatric oncology population in the country. The aim of this study is to present the histopathological findings in Egypt leading pediatric oncology center and impact of implementing CAP protocol on the improvement of patient care. Materials & Methods: CCHE Retinoblastoma study team implemented College of American Pathologist (CAP) protocol of Retinoblastoma version 3.0 (Based on AJCC/UICC TNM, 7th edition) for examining enucleation specimens. Pathology team has conducted an internal training for pathologists. New electronic case report forms (eCRFs) were designed for reporting the progress. Real-time online statistical analysis system was integrated with eCRFs. Implementation included prospective processing and data entry of new specimens properties beside revising of all specimens prior to the implementation of the protocol. Healthcare quality measures included required time for releasing the reports. Results: Between July 2007 and May 2013 we’ve examined 198 enucleation specimens. Mean of all ocular diameters was 22.2 mm. Mean Optic nerve stump length was 6.35 mm. Invaded structures included Cornea (5.3%), Anterior chamber (15.4%), Iris (8.3%), Lens (5.9%), Ciliary body (18.3%), Choroid, (72.2%), Sclera (17.2%), and Orbital tissue (7.1%). Any degree of Optic Nerve invasion was noted in 51% of specimens while surgical margin was involved in 10.8%. Validation rules in eCRFs helped the team to complete missing data and provide systematic reporting. Integrated online analysis system provided a real-time reporting facility for detecting protocol implementation progress. Conclusions / Significance: Implementing CAP retinoblastoma protocol resembled a roadmap for improving patients’ care. It supported the systematic reporting of cases, decreasing errors and missing data and provided research informatics team with a blueprint for developing a real-time monitoring system. This system can be integrated in the practice of emerging teams to ensure adherence to quality measures.

Introduction: Extraocular Retinoblastoma is a disease of developing countries. It represents a challenge for oncologists with its poor prognosis and resistance to chemotherapy. There is a major discrepancy in reporting its incidence between developing and developed world. Egypt represents the third most populous African country, hence, establishing Childrenâ?Ts Cancer Hospital Egypt 57357 (CCHE) -­a non for profit institute-­ represents a hope for childhood cancer patients in Egypt and the middle-­east. The aim of this paper is to report the magnitude of the disease and presenting features of extraocular retinoblastoma in Egypt over the last 6 years. Materials & Methods: We reviewed all the cases that were presented with extraocular retinoblastoma to our center between July 2007 and December 2012. This included ISGEDR 2013 72 reviewing clinical, radiological and pathological investigations. Cases were classified based on international staging of Retinoblastoma and milestone of diagnosing the disease. Results: Between July 2007 and December 2012 our team has diagnosed 48 cases of metastatic disease accounting for 18.3% of all cases with retinoblastoma. Mean age of presentation was 27.3 months and duration of prior symptoms was 17 months. 40% of the cases presented initially with extra-­ocular retinoblastoma while 49% was diagnosed after enucleation and about 9% of the cases ignored followup sessions and came later with metastases. Stage II represented 32.4% of the cases while Stage III was 26.4% and Stage IV accounted for 42.2 % of the cases. Conclusions: Extraocular retinoblastoma is still an under-­studied field due to the few diagnosed cases in developed world. But in the settings of developing countries it represents a real nightmare specially with the increasing number of advanced intra-­ ocular retinoblastoma patients and lack of access to healthcare services.

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