The INCTR Cancer Registration Program

Provision of services for prevention and treatment of cancer has had a low priority with African governments and development agencies. However, cancer is not rare in absolute terms: even ignoring the huge load of AIDS-related Kaposi sarcoma, the probability of developing a cancer by age 65 years in a woman living in present-day Uganda (Kampala) or Zimbabwe (Harare) is only about 30% lower that of her sisters in Western Europe, and the probability of dying from a cancer by this age is almost twice as high. INCTR has long been involved in the supporting cancer treatment – especially for Burkitt lymphoma and retinoblastoma of childhood- and services for palliative care in Africa.

Planning and evaluation of cancer services requires that statistics on occurrence and outcome from the disease are available. The most appropriate source for such data is a population-based cancer registry that records information on all new cases of cancer that occur in a defined, enumerated population. Cancer registries also provide a framework for conducting epidemiological studies into the cause of different cancers. Cancer registration has, however, been slow to develop in Africa, for a variety of reasons, including definition of the residents of a particular area, which of them get cancer and obtaining accurate diagnostic information on those that do. While cancer registration in Africa is more difficult than in developed countries, it is not impossible. Currently, cancer registries cover the population of some 11% of the population of the continent, although the quality of the data collected is variable.

INCTR has long recognized the value of cancer registration, and, where its programmes of treatment and support for cancer patients are being implemented, has given technical and financial help to local registration activities.

In 2011, thanks to a grant from the Doris Duke Cancer Foundation of the USA, the cancer registry programme has been expanded. An East African Registry Network (EARN) has been set up. The members are the registries of Nairobi (Kenya), Blantyre (Malawi), Kigali (Rwanda), Kampala (Uganda) and Harare (Zimbabwe). The aim is to provide an enhanced level of support, primarily though staff training and technical support for data collection, handling, and analysis. In 2010, EARN members will also expand their activities to include recording of stage at diagnosis (for breast and cervix cancer), and survival for these two cancers plus cancers of the oesophagus and prostate (the most common cancers of men in the region). A new activity in prospect is to assist a team from the Martin Luther University, Halle-Wittenburg, Germany, in supporting the setting up of a cancer registry for Addis Ababa, Ethiopia, which will make available the very first cancer incidence data from this large country. The AFRO Region of WHO is supporting the EARN, and the International Agency for Research on Cancer (IARC) is providing technical assistance through provision of the CANREG computer system for managing the registry database.

By the end of 2011, it is hoped to produce a report on cancer incidence from the EARN members, including information of the stage at presentation of breast and cervix cancers. Analysis of the survival data will be undertaken in 2012.

Dr D. Maxwell PARKIN, INCTR Cancer Registration Program Director

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