KARACHI: A new study published in The Lancet Regional Health – Southeast Asia underscores the urgent necessity for a unified national cancer registry in Pakistan. This initiative aims to enhance cancer surveillance, guide policymaking, and improve resource allocation. The study, titled ‘Cancer Registries in Pakistan: A Scoping Review,’ involves contributions from researchers at Aga Khan University (AKU), the University of Wisconsin, and Shaukat Khanum Memorial Cancer Hospital.
Pakistan grapples with a significant cancer burden, reporting approximately 185,748 new cases and over 118,631 cancer-related deaths in 2022. The absence of a national cancer registry leads to fragmented and inconsistent data collection, complicating effective public health strategy implementation.
Dr. Zehra Fadoo, Chair of AKU’s Department of Oncology, highlighted the importance of cancer registries. “They provide population-based data on cancer trends and treatment efficacy, enabling health authorities to monitor disease patterns, guide policymaking, and allocate resources to establish an effective national cancer control program,” she stated.
The study identifies 17 cancer registries in Pakistan, noting significant differences in scope and geographical coverage. Only 19 out of 129 cities contribute data to at least one registry. Operational challenges, limited funding, and inconsistent data methods are prevalent issues. The study outlines the strengths and weaknesses of existing registries to inform future data aggregation and research endeavors.
Sehar Salim Virani, from AKU and the University of Wisconsin, emphasized the need for coordinated action to build a national cancer registry. “This paper is a first step towards that goal. By mapping what exists, we can now move towards what is needed. It’s time to turn fragmented efforts into a unified national response,” she explained.
The Aga Khan University Cancer Registry (AKU-CR) is one of the profiled registries, established in 2009 with an international coding manual to measure the cancer burden at Aga Khan University Hospital. Utilizing USA-based CNExT software, AKU-CR has documented over 71,900 cases. The AKUH Cancer Committee oversees the clinical aspects, ensuring high data quality and relevance.
Despite the existence of a National Action Plan for Non-Communicable Diseases that includes cancer prevention, challenges remain in achieving consistent and comprehensive data collection. The Ministry of National Health Services Regulations and Coordination has nominated the Pakistan Health Research Council as the focal point for the Cancer Registry. A National Steering Committee was established in 2020 comprising members from major cancer registries and data centers.
Syed Nabeel Zafar from the University of Wisconsin emphasized the need for a national registry amid rising cancer incidence. “Government buy-ins are needed to develop a national level registry. While this requires effort and resources, it is not very expensive, and would be very feasible to do in Pakistan,” he noted.
A national cancer registry is deemed essential to enhance cancer surveillance and inform public health action in Pakistan. Collaboration among existing registries, stakeholders, and public and private sectors is crucial to develop a comprehensive, sustainable system serving the entire population.