Karachi (Rustam): A new research study published in the medical journal The Lancet Regional Health – Southeast Asia has strongly emphasized the urgent need to establish a unified national cancer registry in Pakistan. The study highlights that such a registry is vital for effective cancer surveillance, policy-making, and resource allocation across the country.
The study titled “Cancer Registries in Pakistan: A Scoping Review” was jointly conducted by experts from Aga Khan University (AKU), University of Wisconsin, and Shaukat Khanum Memorial Cancer Hospital. It reveals the alarming cancer burden in Pakistan, with approximately 185,748 new cancer cases and over 118,631 deaths reported in 2022 alone. However, in the absence of a national cancer registry, data collection remains incomplete, hindering effective health planning and implementation.
Dr. Zehra Fadoo, Chair of the Oncology Department at AKU, stated, “Cancer registries are critically important. They provide population-based data on cancer trends and treatment outcomes, which help in disease monitoring, policy development, and efficient resource distribution. This is essential for creating a robust national cancer control program.”
The research identified 17 different cancer registries operating across Pakistan, noting significant variations in their scope and geographical coverage. Currently, only 19 out of 129 cities are contributing data to any form of registry. Most registries face challenges such as limited funding, operational difficulties, and data collection issues. The study also outlines the strengths and weaknesses of existing registries to guide future planning and research.
Dr. Sehar Saleem Virani from the Department of Surgery at the University of Wisconsin emphasized, “Establishing a national cancer registry is not a task that one institution can undertake alone. It requires collaborative efforts, government leadership, and institutional partnerships. This study is a first step we’ve mapped what exists. Now, we must move towards what is needed. It’s time to transform scattered efforts into a coordinated national response.”
Among the registries reviewed was the Aga Khan University Cancer Registry (AKU-CR), established in 2009 as a hospital-based registry. It follows globally recognized coding manuals and aims to collect, secure, and disseminate high-quality cancer data to improve prevention, diagnosis, treatment, patient care, survival, and quality of life. Using CNExT software developed in the U.S., the registry has recorded over 71,900 cases to date. Its clinical operations are overseen by the AKUH Cancer Committee, with trained registrars ensuring data quality and clinical relevance.
Pakistan has a National Action Plan for Non-Communicable Diseases (NAP-NCD) which includes cancer prevention. The Pakistan Health Research Council (PHRC) has been designated by the federal Ministry of Health as the national focal body for cancer registry initiatives. A National Steering Committee was formed in 2020, comprising representatives from all major registries and data centers. Despite these efforts, a comprehensive and harmonized national data system remains unachieved.
Dr. Syed Nabeel Zafar from the Department of Surgery and Carbone Cancer Center at the University of Wisconsin said, “Pakistan has long struggled to implement a national cancer registry. Given the rising number of cancer cases, a unified registry is no longer optional it is essential. Several institutions have independently developed local or regional registries, but national-level efforts require government support. While it will take effort and resources, this is not a prohibitively expensive initiative and is certainly feasible in Pakistan.”
In conclusion, the study underscores that a national cancer registry is crucial for effective cancer surveillance and healthcare action in Pakistan. Achieving this goal will require collaboration among existing registries and partnership between public and private sectors to create an integrated, sustainable system that serves the entire population.
