Development of a Cancer Data Registration, Monitoring, and Analysis System in Kuwait
AbdulKarim Al-Abdullah: Health Minister Dr. Ahmed Al-Awadi has issued a decision establishing a “Cancer Epidemiology and Cancer Registry Department” at the Kuwait Cancer Control Center. This step aims to develop the system for recording, monitoring, and analyzing cancer data in the State of Kuwait, enhance the quality of data and statistics related to the disease, and support local and international research and studies.
The decision, published by “Al-Anbaa,” stipulates that the department will be administratively affiliated with the Kuwait Cancer Control Center and the Head of the Medical Board, while being technically affiliated with the Kuwait Center for Disease Prevention and Control (Kuwait CDC), under the General Administration of Public Health Affairs.
The decision defined the organizational structure of the department to include two main units:
First: The Cancer Epidemiology and Medical Statistics Unit.
Second: The Cancer Registry Unit.
The decision also detailed the competencies and tasks of each unit, along with mechanisms for managing cancer data and utilizing it in statistics, research, and scientific studies.
The Cancer Epidemiology and Medical Statistics Unit was assigned several key tasks, including reviewing and monitoring data issued by the Cancer Registry Unit, and working to evaluate and enhance data quality. The unit is also responsible for statistically analyzing data according to the highest medical and scientific standards, and issuing the annual Cancer Registry report. This provides a scientific and statistical foundation to help monitor cancer incidence patterns and trends in the country.
Furthermore, the decision assigned the Cancer Epidemiology and Medical Statistics Unit a role in monitoring research in which the State of Kuwait participates with the World Health Organization (WHO) and international institutions, thereby enhancing Kuwait’s presence and participation in global cancer-related studies and research. The unit is also tasked with collaborating with local and international researchers in the fields of cancer epidemiology, clinical trials, and research related to the quality of cancer care in Kuwait and Gulf countries.
The decision mandated that ethical approval be obtained before using any data for these research projects, alongside activating an auditing and review mechanism in accordance with Ministry of Health regulations.
**Cancer Registry Unit**
The decision granted the Cancer Registry Unit broad competencies, primarily the collection of all cancer cases diagnosed in the State of Kuwait, regardless of the diagnostic method, whether clinical, radiological, laboratory-based, or through death reports. Registration covers all ages and nationalities, with cases collected from the Kuwait Cancer Control Center, public and private hospitals, and health services providing diagnostic, treatment, and palliative care for cancer cases.
**Collecting Cancer Data from Laboratories**
The unit is responsible for collecting registered and confirmed cancer cases from laboratories, including data from Pathology, Cytology, and Hematology. This aims to broaden the scope of information sources and ensure that the Cancer Registry includes cases discovered and diagnosed through laboratory methods.
The decision emphasized collecting mortality data resulting from cancer from the Biostatistics Unit at the Kuwait Health Information Center, including a copy of the death certificate indicating cancer as the cause, with verification of the cause of death according to the ICD (International Classification of Diseases) Cause of Death classification.
The unit’s tasks also include collecting mortality data of cancer patients who died from causes other than cancer, obtained from the Public Authority for Civil Information, including the primary statement and date of death.
The decision also stipulated entering data into Cancer Registry databases according to scientific rules approved by the International Association of Cancer Registries. According to the decision, database sources include laboratory data, in addition to tumor databases, supporting the construction of a comprehensive and accurate information base on cancer in Kuwait.
The decision tasked the Cancer Registry Unit with developing databases as needed, and seeking technical solutions to reduce data entry and processing time, thereby contributing to improving registration efficiency and enhancing the speed and accuracy of obtaining information and statistics. The unit is also required to collaborate with information systems to link Cancer Registry data with existing health system data related to cancer prevention, diagnosis, and treatment.
Among the most prominent competencies included in the decision is monitoring incidence and mortality rates and tracking changes over the years. The unit is also responsible for monitoring survival rates, as well as forecasting future rates using various statistical methods, providing important scientific indicators that help study the evolution of the cancer burden in the State of Kuwait and formulate future projections regarding it.
**Annual Electronic Cancer Registry Report and Linkage to Indicator Dashboard**
The decision mandated the department to publish the annual Cancer Registry report electronically and upload it to the Ministry of Health website using a QR Code. It also stipulated linking Cancer Registry statistics to the interactive dashboard of the Kuwait Cancer Control Center, facilitating the presentation of data and statistical indicators and their utilization.
**International Bodies**
The decision confirmed the department’s participation in studies related to international bodies concerned with cancer registries, research, and epidemiology, including:
* International Association of Cancer Registries (IACR)
* International Agency for Research on Cancer (IARC)
* World Health Organization (WHO)
* Gulf Center for Disease Control (GCDC)
* CONCORD GROUP - School of Tropical Medicine and Hygiene
The decision also allows the Cancer Registry in the State of Kuwait to join research approved by the department’s council, following Ministry approval. It stipulates that through Ministry devices, access to websites related to international institutions is permitted, and open access to databases and scientific journals is provided, supporting the department’s research and scientific work and facilitating access to the latest data and studies related to cancer.
The decision ordered notifying the relevant parties for its implementation, effective from the date of its issuance, and repealing any decision or provision conflicting with its provisions. Thus, the decision establishes a comprehensive system for monitoring, recording, and analyzing cancer data in Kuwait, starting from collecting cases from various diagnostic, treatment, laboratory, and mortality sources, through data auditing, analysis, and monitoring of incidence, mortality, and survival rates, to publishing the annual report, linking statistics with indicator dashboards, and participating in international studies and research.
