Chennai registry bridges gaps in reliable childhood cancer data

A child's chance of surviving cancer is heavily influenced by where in the world they are diagnosed. Of the estimated 400,000 new cases of childhood cancer each year, 85% of them occur in resource-limited countries. Children in many of these regions have a chance of survival below 30%, compared to 80% elsewhere.

A significant challenge in addressing childhood cancer in these regions is the difficulty posed by accurately measuring the need. Problems such as underdiagnosis and poor data collection systems fuel this problem and stymie efforts to allocate resources and advocate for policies to prioritize pediatric cancer care.

Cancer registries can help. They are systems that gather, store and analyze information about cancer cases, including details on diagnoses, treatments and outcomes. Registries are essential for a comprehensive understanding of cancer’s full impact on a region. But despite their value, many countries lack the infrastructure to track childhood cancer data using registries accurately, and those that do exist may be incomplete or underfunded, making it even more challenging to obtain reliable statistics on childhood cancer. This is where St. Jude can make a difference.

Global scholar focuses on registry building

Recognizing the value of registries, St. Jude Global Scholar Venkatraman Radhakrishnan, MD, MS, a graduate of the Master of Science in Global Child Health program at the St. Jude Graduate School of Biomedical Sciences, set out to create the first population-based childhood cancer registry (PBCCR) in Chennai, India. Venkat is leveraging the opportunity to apply the skills and knowledge attained during his studies to his work as a medical and pediatric oncology professor at the Cancer Institute (W.I.A) in Chennai and to his Global Scholars Project focusing on PBCCR. The Department of Global Pediatric Medicine funds Radhakrishnan’s project, with training and mentoring from the Global Scholars Program and guidance from the St. Jude Global Disease Burden and Simulation Transversal Program.

“The majority of children with cancer are in resource-limited countries, yet less than 10% of the global data comes from these regions,” said Radhakrishnan. “There are numerous publications on the global incidence of childhood cancer, but the data often relies on assumptions, with projected estimates of cancer incidence rather than actual, region-specific statistics.”

The absence of reliable data on childhood cancer worldwide has far-reaching consequences. The lack of accurate statistics means governments and international organizations may not have the information to fully grasp the need for resources, policy changes, or research focused on childhood cancer. The data gaps make it difficult to create strategies tailored to specific countries’ unique needs and challenges, resulting in underfunding and neglect.

In 2018, the World Health Organization, alongside St. Jude and its global partners, launched the Global Initiative for Childhood Cancer with the goal of improving childhood cancer survival to at least 60% by 2030.

“How can you claim to have improved survival rates to 60% unless you have a full picture, knowing how many children in all parts of the world are living with cancer, how many are surviving, and how many are not?” Radhakrishnan questioned.

Those questions were the driving force behind his decision to create the Chennai PBCCR.

A solution for accurate childhood cancer data collection in a resource-limited country

The Chennai PBCCR collects high-resolution data on all pediatric cancer cases in patients aged 0-19 years from Chennai residents. The registry contains data such as cancer stage, treatment specifics, socioeconomic background, treatment compliance and referral sources. The registry recently released its inaugural report, which will be published annually and shared with participating centers to help inform policy development to improve childhood cancer care.

Radhakrishnan and his team collected data on 241 patients from 2022 and are working to expand this number in the future. This data from the Chennai PBCCR is invaluable, filling the gap in reliable childhood cancer incidence and survival data.

Radhakrishnan’s goal is to expand the registry across the entire state of Tamil Nadu, which has a population of 80 million. “Expanding the registry to cover Tamil Nadu would make it one of the largest PBCCRs in the world in terms of population covered. Such a large and comprehensive population has never been covered in by this type of registry,” he said.

“This wouldn’t have been possible without the support and collaboration from St. Jude and my mentors. They believed in me and understood that what we’re doing isn’t just for the children of my city but for children around the world,” said Radhakrishnan. “That belief made all the difference.”