Registries, data and measurement

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Published: 22 Nov 2013
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Dr David Forman - International Agency for Research on Cancer (IARC), Lyon, France

Dr David Foreman of the International Agency for Research on Cancer (IARC) speaks to ecancertv about the important role of cancer registries at the 5th International Cancer Control Congress in Lima, Peru. “We strongly believe that no cancer control program can be developed without underlying information on the burden of cancer in a particular population,” he states.  This data, collected by community cancer registries, is collated by the IARC and made accessible. How can low-income countries develop their own cancer control plans with the IARC’s information?

5th International Cancer Control Congress

Registries, data and measurement

Dr David Forman - International Agency for Research on Cancer (IARC), Lyon, France

This morning I was talking about the role of cancer registries in the development of cancer control programmes around the world. We strongly believe that no cancer control programme can be developed or get off the ground without underlying information on the burden of cancer in a particular population or a particular country. Part of my job at the International Agency for Research on Cancer is to bring together the data that are collected by cancer registries in different countries and in different communities and bring this together in a comparable and standardised form and make it available, both in scientific publications and in various web applications that are freely available and can be accessed by anyone wanting to look at the particular types of cancer that affect a particular population or the relative changes in cancer that are occurring within that population over time.

We believe that without this type of information cancer control programmes cannot properly start because you need to understand which types of cancer affect which populations, what is happening to those cancers, whether there are newly emerging cancers or, indeed, whether as a result of policies whether they are to prevent cancer or to detect it at an early stage, you need to be able to monitor whether those policies have been effective or not. That can only come about through reliable monitoring of the disease through surveillance and that is the task of cancer registries.

Our job is twofold: one is to collect the information but the other is to improve the extent and quality of the information. Collecting the information when one has an efficient and an effective cancer registry in place is relatively straightforward. When such cancer registries do not exist then we are engaged with the health authorities in a given country to build capacity for cancer registries either by providing support or through developing training protocols and providing support to those seeking to start a new registry. We believe that there are many countries, especially in low and medium resource areas of the world badly in need of the vital statistics that a cancer registry produces and we are trying to build up a global programme of support for cancer registries in such areas. That is the Global Initiative for Cancer Registries and I also spoke about that this morning, as to how this initiative was being set up and the current progress being made.

What will your message be to the authorities for the Global programs for cancer registry?

The message is that everyone now believes in cancer control but you can’t do cancer control, you can’t organise or start to organise a cancer control programme without having the fundamental building blocks which are the data collected by cancer registries. You need to know the burden of cancer within a particular population, you need to know which cancers are common and you need to know whether those cancers are changing in terms of their incidence over time. So cancer control needs cancer registration to provide a starting point.