Blood Cancer Registry

What is cancer registration?

When someone is diagnosed with cancer, including blood cancers, the doctor or hospital records the relevant details. This applies to people of all ages, including children. This information is collected by the National Cancer Registry. Registration is the only way that we can know how many people are getting cancer and what types of cancer they have.

Most countries in the world have a registration system and registration has been running for over 20 years in Ireland. As part of the Blood Cancer Network, the Registry will be able to investigate the causes of some cancers, to look at how patients are treated, how successful treatments have been and what patients’ quality of life is during and after treatment. We can also tell if the number of people getting cancer is going up or down, so the health service can make sure services and staff are available in the right place.

What does the registry collect?

We need to know some details about each patient (such as name, address, age and sex) to make sure we are recording information about the right person. We also need to know about the type of cancer they have, the treatment they receive and their progress.

Do patients need to do anything?

Patients need not do anything – there are no forms to fill in and nothing to sign. The hospital will confidentially pass the relevant information to the cancer registry.

What will we do with this information?

We are very careful with the information and follow strict rules about how we look after it and who can use it. We store the information on computers in a safe place with secure passwords. It is all kept strictly confidential and is only available to appropriate staff inside the registry. Our reports will never identify any particular person, even if they have a rare cancer.

If I am a patient, will anyone contact me?

The Registry is working with other researchers in the Blood Cancer Network to improve our understanding of blood cancers and to help improve treatments and other services to patients and their carers. Some of this research will use information which we already collect, but we will also need to contact some patients. The first thing we will do is to contact you and get your permission for a researcher to contact you. You are under no obligation to agree to this and all information you provide will be treated in absolute confidence.