IARC and St. Jude announce partnership to expand global pediatric cancer registries

The International Agency for Research on Cancer (IARC), part of World Health Organization (WHO), and St. Jude Children’s Research Hospital in Memphis, Tennessee, have signed an agreement to help increase and strengthen pediatric cancer registries globally. The partnership is designed to provide national and international health officials with data needed to help reduce global disparities in childhood cancer survival.

The announcement comes on International Childhood Cancer Day.

“Cancer registries provide essential information to guide the prioritization of efforts focused on advancing cures for childhood cancer,” said James R. Downing, M.D., St. Jude president and CEO. The agreement brings together the technical expertise and global collaborative networks of both organizations to expand access and improve the quality of population-based cancer registries in low- and middle-income countries.

Officials locally and globally rely on population-based cancer registries to identify cancer patterns, monitor trends and evaluate progress toward reducing cancer death and disability. Yet, only 13% of children worldwide live in countries with population-based cancer registries.

“There is a lack of reliable childhood cancer data particularly in developing countries,” said Elisabete Weiderpass, M.D., M.Sc., Ph.D., IARC director. “These data are critical to better understand childhood cancer and put in place efficient public health policies to tackle this disease. This new bilateral agreement will play a key role in implementing quality cancer registration programs and training in all aspects of childhood cancer registration in all participating countries.”

The partnership complements the Global Initiative for Childhood Cancer that was announced by WHO and St. Jude in 2018. The effort brought together WHO, St. Jude, IARC and other partner organizations to transform pediatric cancer treatment worldwide to cure at least 60% of children with cancer by 2030, a goal that will result in 1 million lives saved.

“Without relevant, high-quality and country-level data, we cannot accurately measure the impact of our work,” Downing said. “Through this collaboration, we will build an international network of pediatric cancer registries. These registries will serve as a powerful tool for the global community in the fight against pediatric cancer.”

Harnessing data to save lives

The IARC–St. Jude partnership led to creation of a specific childhood cancer program within the Global Initiative for Cancer Registry Development (GICR). This new program (ChildGICR) expands the reach of the GICR. IARC launched GICR in 2011 to improve cancer data collection in low- and middle-income countries.

The ChildGICR centers on three projects:

• Expanding and improving pediatric cancer registries in all six WHO regions
• Educating and training registry staff and professionals to improve and enhance data collection
• Conducting research to better understand the pediatric cancer burden and economic costs

Work is underway, starting with efforts to expand and enhance population-based childhood cancer registration in Mexico. Additional countries, from other WHO regions, are expected to join soon. Education and training materials to strengthen the global cancer registry workforce, with a particular emphasis on pediatric cancer, are being drafted along with guidelines and policies on data standards and information sharing.

The vision

Each year about 400,000 children develop cancer, half of whom are never diagnosed. In the 1960s, pediatric cancer was almost universally fatal. But research, including the realization that childhood cancers are different than adult cancers, has revolutionized pediatric cancer treatment.

In higher income countries such as the U.S., overall pediatric cancer cure rates now exceed 80%. But about 90% of young cancer patients live in low- and middle-income countries with estimated cure rates of 20%.

Creating systems to capture data on childhood cancer patients, including their treatment and outcome, is vital for addressing disparities across regions of the world.

“Effective information systems are needed to successfully reach the Global Initiative target of at least 60% survival for children with cancer,” said Bente Mikkelsen, M.D, director of World Health Organization’s Department of Noncommunicable Diseases. “Investing in cancer registries and implementing supporting policies can increase access to cancer care for children. We must have accurate data to strengthen childhood cancer programs and to monitor progress within countries and around the world. This is a necessary political choice.”