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NCI Joins International Initiative to Develop Global Cancer Registries

In September 2011, the United Nations General Assembly declared that non-communicable diseases, including cancer, pose a social and economic challenge of “epidemic proportions,” particularly in low- and middle-income countries. Cancer is now one of the leading causes of illness and death worldwide, and the global burden of cancer is predicted to rise from 12.7 million new cases in 2008 to 21.4 million in 2030, with more than half of these occurring in less developed regions.

These global figures are based on the data of population-based cancer registries, which make it possible to estimate cancer rates in different countries or regions.

Gathering data to fully understand a problem can be a critical step on the path toward a remedy. “Yet, in many parts of the world, accurate assessments of the burden of cancer and the distribution of its various types are unavailable or inaccurate,” NCI Director Dr. Harold Varmus and Cancer Research UK Chief Executive Dr. Harpal Kumar wrote in a March 6, 2013, commentary in Science Translational Medicine.

As of 2007, population-based cancer registries covered only 6 percent of the population in Central and South America, 4 percent in Asia, and 1 percent in Africa, as compared with 83 and 32 percent, respectively, in North America and Europe. Thus, the most recent estimates of the cancer burden in developing nations “are extrapolations based on limited observed data,” said Dr. Brenda Edwards, senior advisor for cancer surveillance in NCI’s Division of Cancer Control and Population Sciences.

To help gather more complete and reliable data on cancer in low- and middle-income countries, NCI’s Center for Global Health (CGH) has joined an international effort, led by the International Agency for Research on Cancer (IARC), to develop population-based cancer registries where the need is greatest. Through its Global Initiative for Cancer Registry Development in Low- and Middle-Income Countries (GICR), launched in November 2011, IARC is establishing a network of regional “hubs” across Asia, Africa, and Latin America and the Caribbean. These hubs, or resource centers, will provide support, training, and infrastructure to local networks of cancer registries.

A Four-Pronged Approach

“A population-based cancer registry is central to planning and evaluating any cancer control initiative in any location,” said Dr. Edwards. “If you have an intervention in place to address controlling a disease, it will help you track whether some of the numbers and characteristics of that disease are getting better or worse over time.” Those interventions may focus on better prevention, screening, or treatment of cancers.

For example, Dr. Edwards, explained, public health professionals could use registries to track changes in the incidence of tobacco-related cancers after a tobacco-control initiative is implemented. In developing countries and elsewhere, tobacco use is still by far the most important modifiable behavior that increases the risk of cancer, Drs. Varmus and Kumar noted.

To carry out their mission, the IARC regional hubs will perform four roles:
• Provide technical and scientific support to countries
• Deliver tailored training in population-based cancer registration and use of data
• Advocate for the cause of cancer registration in the region and facilitate the establishment of associations and networks of cancer registries
• Coordinate international research projects and disseminate findings

As a partner in this initiative, NCI is contributing funding as well as serving in an advisory capacity. GICR aims to raise at least $5 million over 5 years to further its efforts.

“IARC is developing a good strategy with these decentralized hubs in different regions,” said Dr. Lisa Stevens, deputy director for planning and operations at CGH. “We want to put our support behind [this effort] and make sure we’re working in conjunction with IARC, and the other partners, rather than competing with them for limited resources.”

CGH will also contribute technical expertise and guidance to GICR. The Center holds two seats on a GICR advisory group, which are being filled by Dr. Edwards and Dr. Joe Harford, senior project officer at CGH. Dr. Edwards, who has provided over two decades of leadership for NCI’s Surveillance Epidemiology and End Results (SEER) Program, has extensive experience working with registries in the United States, and Dr. Harford, through his work with the Middle East Cancer Consortium, has worked with, and examined the need for, cancer registries in that region.

The first IARC hub, based at Tata Memorial Hospital in Mumbai, India, was inaugurated in October 2012. The Mumbai hub will provide technical support, training, advocacy, and research opportunities to cancer registries across the 30 countries in South-Central, Southeast, and South Asia.

Another hub, in Izmir, Turkey, will soon be launched and will assist cancer registries in the 27 countries of Northern Africa and Western Asia. Activities at the Izmir hub will build on the existing efforts of the Middle East Cancer Consortium, a partnership between the health ministries of Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey that was launched in 1996 with assistance from NCI. Plans are also moving forward to establish an IARC hub for Latin America and the Caribbean and a “virtual” hub and registry for sub-Saharan Africa that will not have a physical location.

Getting Down to Work

Initially, Dr. Stevens explained, the hubs will focus on well-established existing local registries and include specific time-oriented achievements and evaluation metrics. The hubs will help such registries develop into broader population-based registries that meet the standards for publication of data, use in cancer control planning and assessment, research projects, and incorporation into data systems such as Cancer Incidence in Five Continents, or CI5, the international reference source of incidence data. “Getting some early successes in the first two hubs, in Mumbai and Izmir, will be helpful, and perhaps could even engage some additional partners,” Dr. Stevens added.

During its first year, the Mumbai hub has organized training through regional courses and online webinars. These training efforts, carried out at and by the IARC hubs, aim to create a network of experts who can serve as consultants and trainers within each region. That way, said Dr. Stevens, “people in the region can learn from their peers” rather than rely on IARC staff in Lyon, France, for training. To increase the capacity for cancer registration in low- and middle-income countries, training is needed in epidemiology, pathology, and the use of existing data systems for tracking cancer statistics.

The Mumbai hub has also provided technical support to local cancer registries through expert visits and conducted advocacy and networking efforts to explain the importance and cost-effectiveness of its activities. You need more than just technical, clinical, and scientific people to make initiatives such as GICR a success, Dr. Edwards explained. “In order to do this, you have to have high-level support from government ministers and those who are responsible for the health of the country.”

Because resources and technical expertise are scarce, the success of the IARC hubs and other efforts to address the growing international challenge of cancer will require a collaborative, transnational approach.

“There is so great a need for better data and capacity, and so few people who can help address those needs,” Dr. Edwards said. “It’s important that GICR’s efforts be integrated and coordinated whenever possible and that we share knowledge about all the separate ongoing activities.”

GICR Partners

NCI’s Center for Global Health is just one of many partners in the Global Initiative for Cancer Registry Development in Low- and Middle-Income Countries, which was launched at the World Cancer Leaders’ Summit in November 2011. Other partners include the Union for International Cancer Control, the International Atomic Energy Programme of Action for Cancer Therapy, the U.S. Centers for Disease Control and Prevention, and the American Cancer Society.