Blood Cancer Registry
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 Ireland (NCRI). This process of cancer registration is the only source of information on how many people nationally are getting cancer and what types of cancer they have. It is used to generate national statistics and inform for future healthcare planning. For example, if the number of people getting cancer is going up or down, the health service can make sure services and staff are available in the right place.
Most countries in the world have a cancer registration system and registration has been running for over 20 years in Ireland. NCRI are a partner of Blood Cancer Network Ireland. Because of this collaboration, BCNI support NCRI in collecting blood cancer data and can then use this information 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. BCNI only use data and information from patients who have given informed consent in these studies.
What information 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. BCNI are very interested in improving the long-term outcomes for people who have recovered from blood cancer. We have developed a survey to assess side effects and quality of life experienced by people previously diagnosed with blood cancer. These surveys are sent by post and the answers help us to better understand the best treatment options for blood cancers.
Do patients need to do anything?
Patients must sign a consent form to be included in the blood cancer registry. People who have been diagnosed with blood cancer in Ireland may receive a consent form in one of two ways - by post from NCRI, or in person (if you have consented to donating samples to the Blood Cancer Biobank Ireland you will also have been given information and a consent form for the blood cancer registry). The NCRI will still collect data from every individual diagnosed with cancer nationally for national statistics without you having to fill in any forms - this information is not shared with BCNI and is not used for research purposes, except for those individuals who explicitly consent.
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?
NCRI is working with researchers in BCNI to improve our understanding of blood cancers and to help improve treatments and other services to patients and their carers. For this research, we will contact some patients. In the first instance, NCRI will 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.