Children’s Cancer Registry of Oman

Oman, located at the tip of the Arabian peninsula, is a developing country with a population of 2.5 million. It is a member of the six-nation Arabian Gulf Cooperation Council (GCC) and is bordered by Saudi Arabia, United Arab Emirates and Yemen. In the last three decades, the country has made rapid strides in the provision of modern health care to the extent that in a report published recently, the WHO ranked Oman first in the world for excellence in health system peformance (i.e. efficiency of translating expenditure into health). Its resources are being used judiciously for education and the establishment of state-of-the-art health care facilities such that Oman now has a well-established network of primary, secondary and tertiary health care centers. Sultan Qaboos University Hospital and Royal Hospital are the two tertiary care centers that are involved with the management of all children with cancer. A National Cancer Registry, Oman National Cancer Registry (ONCR), was established by the Ministry of Health in 1995. However, since 40% of the population is in the pediatric age group, it was decided that a separate Childhood Cancer Registry was needed in order to collect information relevant to planning future interventions and policies for children with cancer.

Work on the Oman Children’s Cancer Registry was started in April 2001 as a joint venture between the Department of Child Health, Sultan Qaboos University (SQU) Oman and the North of England Children’s Cancer Unit, Newcastle University, UK. Modeled on the the “Northern England Young Person’s Cancer Registry,” it uses the software developed in Newcastle University. All children in Oman under the age of 13 diagnosed with cancer since January 1995 have been entered retrospectively into the registry. In addition to patients treated at the two referral centers, efforts are being made to trace the patients coming from peripheral areas, and patients from Oman who have been treated in neighboring countries. While case registration will inevitably overlap with that of the ONCR, data collected will be more detailed, and focused on future research and clinical needs. Thus the registry will capture core demographic information as well as relevant data relating to the diagnosis, treatment and outcome of each child. Separate data capture forms have been devised for solid tumors and leukemias, and clinical data will be entered by physicians, but other data elements will be collected by a newly appointed data assistant from patient records and family interviews.

Data Collected for Oman Cancer Registry DEMOGRAPHICS Date of Birth Gender Ethnicity/Place of Birth Socioeconomic Status Details of Parents Consanguinity Cancer in Siblings

DIAGNOSTIC Date of Pathological Diagnosis Diagnosis And Basis Of Diagnosis Hospital Based Information Detailed Investigation Information TREATMENT-RELATED INFORMATION Follow-up data will be collected at 3, 6, 12, 24, 36, 48 and 60 months. It will include information on major treatment complications and vital status of the child, including alive-disease free, alive-relapse, alive-with disease, or dead.

Structure And Function Of The Registry

A Steering Group has been formed with members from both tertiary care hospitals in Oman, a representative from the Ministry of Health, ONCR and a full-time data assistant. Dr Zakia Al Lamki from SQU chairs the group with guidance and active assistance from Professor Louise Parker from the North of England Children’s Cancer Research Unit at the University of Newcastle. Cases are defined based on clear-cut geographical, temporal and diagnostic criteria. Retrospective case ascertainment is done via SQUH and Royal Hospital and from hospitals in the border areas as well from the Center for Treatment Abroad, which has information regarding Omanis sent abroad for treatment. Prospective ascertainment is conducted with the help of clinicians at both tertiary care centers. For cross checking this data, records at HIS, ONCR and the Centre for Treatment Abroad are accessed.

Data collected in the Register is freely accessed by members of the Steering Group, but other researchers and clinicians who wish to use it are granted permission from the committee based on their individual proposals. The Steering Group monitors the data and periodically analyzes it for relevant interventions. To date, 70% of the preliminary data of the leukemia cases has been entered and institutional breakdown of leukemia figures are under review.

We hope our effort will be a model for the creation of similar registries in other developing countries and will encourage cooperation between the developed and developing world.

Contributing authors: Zakia Al-Lamki; Wasifuddin Shah; Asila Al-Harthy; Yasser Wali; Richard Hardy; Mathew Zakariah; Louise Parker; Nagwa ElBanna; Jawad Al-Lawati