Happy New Year! The beginning of 2017 certainly is flying by. All those things put off until January are now front and centre demanding attention. As the year opened I’ve had multiple communications with external folks regarding disease-specific cancer registries. This is a very important topic for patients, caregivers, physicians, researchers and policy makers alike and the focus of News from the Director’s Office this month.
NCRI is funded by the Department of Health with the aim to collect cancer data on incidence, mortality and first course treatment for the entire nation. This is our expertise, it’s what we do and we do it well. The dedicated staff at NCRI have over 20 years of experience collecting accurate reliable cancer information for Ireland. The drawback is that the usefulness of the information NCRI collects is limited since it misses much of the actual cancer experience. This is because cancer is a disease that has changed over time but NCRI data collection content has not. Fortunately, many patients are now surviving a very long time after diagnosis and/or may be living a long time with their disease. Unfortunately, The Department of Health does not fund NCRI to collect information on this crucial part of the cancer experience.
This is where disease-specific registries come in. Disease-specific registries aim to collect more detailed diagnosis, treatment and survival information than NCRI is currently funded to do. This is very important work that should be done at the national level utilising NCRI expertise and made as widely available as possible. Currently we are involved with two externally funded disease-specific registries (Blood Cancer Network Ireland, Irish Prostate Cancer Outcomes Research). These registries attempt to fill a critical gap in our cancer knowledge. This knowledge will have the ability to tell the real cancer story thus directly impacting patient, physician and policy makers’ decision-making. However, the challenge with having individually developed, externally funded disease-specific registries is that they do not collect standardised data (limits knowledge across disease types), exist on short term funding (continuity of long term follow up at risk), may not cover 100% of the population (can’t provide true national picture), and are not cost effective (redundant use of resources). To do this essential work properly there should be a national strategy for defining and collecting the necessary data to accurately capture the national cancer experience.