Background

The Irish Prostate Cancer Outcomes Research is establishing a nationwide prostate cancer registry which captures high-quality information from newly diagnosed prostate cancer patients in the Republic of Ireland. The registry collects clinical data about prostate cancer patients, such as the type of treatment they are receiving, and patient’s self-reported experiences of care, their physical and mental well-being and health related quality of life. The registry generates robust data on a range of important clinical outcomes of men with prostate cancer and assesses processes, consistency and quality of prostate cancer care. By providing evidence-based data and recommendations to clinicians, hospitals, decision-makers and the National Cancer Control Programme, the registry will promote equal access to services and improvements in care nationally. By bringing together, for the first time, data on clinical and patient-reported outcomes that have been collected over time, the registry will ultimately lead to the improvement of patient experiences and maximise quality of life for men diagnosed with prostate cancer in Ireland.

Aims

Our main objective is to collect detailed clinical and quality of life data on Irish men’s prostate cancer journey to better inform future care delivery, knowledge of the disease and best use of health care innovations and resources.

The aims of IPCOR are:

  • To conduct a unique clinical study on men diagnosed with prostate cancer in Ireland and to provide a framework for the collection of high-quality clinical data and quality of life information reported by patients.
  • To assess men’s experiences of care, their physical and psychological wellbeing and quality of life throughout their cancer journey.
  • To calculate differences in clinical outcomes, patient’s quality of life and their experiences of care between hospitals and regions in order to develop initiatives that ensure equal access to care and high standards of care nationally.
  • To compare our national results with similar international studies, in particular, from the UK and Australia, to ensure that Irish patients are receiving the highest standards of care in the world.
  • To provide evidence-based data and recommendations to doctors, hospitals, decision-makers and the National Cancer Control Programme to promote improvements in prostate cancer care.

How will the Prostate Cancer Registry collect data?

IPCOR research officers, employed by the National Cancer Registry, will identify men that have been newly diagnosed with prostate cancer from pathology reports and medical files in participating hospitals.

These men will then be sent a patient information leaflet to tell them about the study, consent forms and some quality of life questionnaires.

If they choose to take part in the study, men can complete the consent forms and quality of life questionnaires online or they can fill in the paper consent forms and questionnaires and return them in the envelope provided.

The IPCOR research officers will collect and record clinical and treatment follow-up data from the patient’s medical records. Men’s clinical data and the quality of life information that they have sent us will be linked together in a database and will be kept strictly confidential.

Men will receive and fill in quality of life questionnaires once a year. This information will be added to the database.

Once we have a large amount of data, we will analyse the clinical and quality of life information and produce reports about men’s prostate cancer journey. No patients, doctors or hospitals will ever be identified in any report we publish.

Irish Prostate Cancer Outcomes Research - About Ipcor

Research & Publications

Research

In order to improve prostate cancer care, IPCOR will publish reports with a high level of clinical information and sophisticated data analysis.  These reports will be published annually and delivered to service providers and decision makers in healthcare.

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