The National Cancer Registry Ireland

Organisation

The Registry is set up by statute, and wholly funded by the Department of Health and Children. The overall direction of the Registry is the responsibility of the National Cancer Registry Board.

The National Cancer Registry Board

The National Cancer Registry Board was established by the Minister for Health in 1991, by Statutory Instrument. Its functions were laid down in its Establishment Order as follows:

1. to identify, collect, classify, record, store and analyse information relating to the incidence and prevalence of cancer and related tumours in Ireland
2. to collect, classify, record and store information in relation to each newly diagnosed individual cancer patient and in relation to each tumour which occurs
3. to promote and facilitate the use of the data thus collected in approved research and in the planning and management of services;
4. to publish an annual report based on the activities of the Registry;
5. to furnish advice, information and assistance in relation to any aspect of such service to the Minister.

What is a Cancer Registry

A cancer registry is a non-profit organisation (usually publicly owned) which:

• collects comprehensive information on all new cases of cancer occurring in a defined population
• often collects information on cancer deaths in the same population
• stores this information securely and permanently
• analyses the information and produces regular reports

The "defined" population may be that of a whole country, a state, region, city or other administrative area, but it is essential to know accurately the size of the population of the area. If this cannot be done, then a hospital or clinic based registry can collect some information, but this is not easy to compare with figures from other areas, as some cancer patients may not come to that hospital or clinic.

Most developed countries have, at least, a number of regional population-based registries and many, including Ireland have a single registry for the entire country.

Why have a Registry

Any other method of counting and describing cancer will miss some cases and so cannot reliably tell

• if certain cancers are becoming more or less frequent
• if the risk of developing cancer is different for people living in different areas, or working in different jobs
• if different types of medical care can influence survival from cancer
• if cancer screening programmes are really working.

The registry can store information for very long periods (the Danish registry has information on every cancer case in Denmark since 1944) and in a standard form so that periods can be compared.

Almost all registries use internationally agreed standards, so figures on rates of occurrence or survival for different countries can be compared

How is this information used

Cancer registry information is not of much value if just stored away, so one of the main functions of the registry is to make as much use of the data as possible. Among the many uses of the data are:

prevention:

• research to discover the causes of cancer, by looking at reasons for difference in risk for different groups
• using information from the registry in education and information programmes

detection:

• examining the effectiveness of screening programmes
• identifying groups of people at greater risk and who should be frequently checked for cancer

treatment:

• looking at the effectiveness of different types of treatment
• checking if every patient has the same access to treatment
• helping doctors assess their own performance

How does a Registry Work?

The main aim of any registry is to be sure that all new cancer cases are picked up by it. The best way to do this is by using more than one source of information, so that few cases "slip through the net".

In general registries pick up cases:

actively:

by employing workers to go to hospitals and other health care centres regularly to look through records for new cases of cancer

passively:

by waiting to be notified of new cancer cases by doctors, nurses, laboratories and so on, and by processing death certificates.

The former method is usually more effective, but more expensive.