How IPCOR learns from your participation
Eligible patients having prostate cancer investigations are contacted by IPCOR staff about participation.
Depending on hospital-specific factors, patients may meet with research staff in person, or may be recruited remotely by email or post.
Clinical data is stored in the IPCOR registry. Biological specimens, including urine and blood, are stored in -80° freezers.
All participants are asked to complete baseline PROMs questionnaires at the time of recruitment. Participants who receive a diagnosis of prostate cancer are also asked to complete 6 month, 12 month and annual questionnaires.
How does IPCOR help patients?
As well as building a foundation for research, the data we collect is continuously being fed back to hospitals and clinicians to highlight strengths and weaknesses in current care. IPCOR recruits eligible men undergoing investigations for prostate cancer, which means that some of our participants will receive a diagnosis of prostate cancer, while some will be prostate cancer-free.
By using data collected from patients undergoing prostate investigations in Ireland, IPCOR can follow the patient experience from first referral to treatment and follow-up.
Our research is consistently guided by patient values, and we work closely with a group of ten men who are living with a diagnosis of prostate cancer, who form the LEAP (Lived Experiences Advisory Panel) group. Learn more about their work here.
IPCOR recruitment since launching in March 2025
What do we learn from your information?
Demographics
Demographic information includes things like age, ethnicity, family history, smoking history, and where people live. Some of these factors may influence a person’s risk of developing prostate cancer or their experience of care. Collecting this information helps us better understand who is being diagnosed with prostate cancer and whether experiences or outcomes differ between different groups of people.
> 24% of our participants report having a family member (father or brother) who has been diagnosed with prostate cancer.
Clinical Information
Clinical data includes information about referrals, investigations and diagnostics, treatments, as well as healthcare system factors, such as wait times. Collecting this information helps us understand how prostate cancer is diagnosed and treated in real-life healthcare settings and where care pathways may be improved.
> On average, IPCOR participants waited 42 days between being referred for biopsy and undergoing biopsy.
Biological samples
Some participants may be invited to provide blood and urine samples, which will be stored for up to 10 years for future research. These samples will help researchers better understand prostate cancer and identify signs from biological samples (known as biomarkers) that can provide important information about a person's health. This research may help to improve diagnosis and treatment of prostate cancer, and support the development of more personalised care in the future.
> IPCOR have started collaborating on prostate tissue studies with researchers based in University College Dublin.
Patient Reported Outcome Measures (PROMs) Questionnaires
PROMs are questionnaires that ask about a person’s own experiences, including quality of life, symptoms, wellbeing, and supportive needs. These responses help us understand the impact of prostate cancer and its treatment from the patients' perspective. Learning about your experience through PROMs questionnaires helps us to understand the difficulties patients face and supports the development of resources that aim to reduce these difficulties in meaningful ways.
Our questionnaires
Taking 15-20 minutes of your time to complete our questionnaires will help us shapes our understanding of your experience beyond what laboratory results can tell us.
All patients undergoing a prostate biopsy are invited to complete our baseline questionnaire when they first join the study. This helps us compare the experiences of different groups of patients. If your biopsy results show that you do not have prostate cancer, you will not be contacted to complete any further questionnaires.
For patients who receive a diagnosis of prostate cancer, we ask that you complete the baseline questionnaire before starting any treatment. Patients with a prostate cancer diagnosis will also be invited to complete follow-up questionnaires at 6 months, 12 months, and then annually.
By completing these questionnaires over time, you will help us gain a deeper understanding of people’s experiences living with and beyond a prostate cancer diagnosis, and how these experiences may change throughout pre-treatment, post-treatment and recovery.
Our team will reach out to you when you are due to complete your next questionnaire. If you have any queries or are wondering why you haven’t heard from us yet feel free to get in touch at 01 620 0600 or email ipcorsupport@ucd.ie.
Thank you from the entire IPCOR team!
