Yogyakarta Pediatric Cancer Registry: an international collaborative project of University Gadjah Mada, University of Saskatchewan, and the Saskatchewan Cancer Agency.

ABSTRACT

INTRODUCTION: In July 2001, a 'twinning' project was undertaken between University Gadjah Mada, Indonesia, and the Saskatchewan Cancer Agency, Canada to create a computerised Pediatric Cancer Registry at Sardjito Hospital, Yogyakarta city. OBJECTIVES: To analyse information from the Yogyakarta Pediatric Cancer Registry (YPCR) in order to i) determine the prevalence of pediatric cancers in Yogyakarta Special Region and, ii) compare the demographics of pediatric malignancies in the Special Region (population 3.3 million), with those of the Saskatchewan Cancer Registry in the province of Saskatchewan (population 1 million). METHODOLOGY: In May 2001, a computer dedicated to the YPCR was installed at Sardjito Hospital. Bilingual (English/Indonesian) data capture forms were developed for data extraction from hospital health records. Data items were then entered into a data base using the Statistical Package For Social Sciences (SPSS) program. Two projects were initiated i) a prospective study from 2000-2009 of pediatric cancer cases from the YPCR, and ii) a comparison of demographics from both Cancer Registries during the time period 1996-2003. Comparative data were obtained for age, sex, diagnoses, and referral patterns. Results were analysed using the SPSS software program. RESULTS: i) In the 10 year prospective study, 1,124 pediatriccancer cases were accrued in the Yogyakarta Registry, the majority being in the age group 0-5 years. Malefemale 71. Leukemias were the most common diagnosis, followed by retinoblastoma and neuroblastoma. The majority of patients (68%) were referred from outside the catchment area of Yogyakarta Special Region. ii) In the 8 year archival comparative analysis, the most striking contrasts were a higher proportion of children with retinoblastoma and negligible numbers of pediatric brain tumors in the Yogyakarta Registry. CONCLUSION: This is the first published report of a computerised pediatric cancer registry in Indonesia. The differences in diagnostic frequencies noted above may, in part, be due to comparisons between the population-based Saskatchewan Cancer Registry versus the hospital-based Yogyakarta Pediatric Cancer Registry. The contrasts in demographics are multifactorial, and require further investigation.