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Abstract
Purpose To describe the Irish Prostate Cancer Outcomes Research (IPCOR) registry. The cohort was collected to inform and improve the prostate cancer journey of men in Ireland.
Participants Established in 2015, IPCOR was a unique large-scale prospective cohort study registering men with prostate cancer in Ireland. From 2016 to 2020, IPCOR collected data on 6816 men who were newly diagnosed with prostate cancer across 16 hospitals, both public and private. A comprehensive clinical dataset was collected, capturing detailed information on men’s diagnosis, treatments and follow-up. In addition, a subset of 873 men completed patient-reported outcome measures.
Findings to date The IPCOR study has revealed several key insights into prostate cancer diagnosis and treatment in Ireland. The data indicate a high rate of diagnosis through opportunistic Prostate-Specific Antigen screening, with many cases identified at an early stage.
Future plans IPCOR invites collaboration from the global cancer research community to use this resource to advance prostate cancer research and improve patient outcomes worldwide. IPCOR aims to continue updating long-term survival follow-up data for this cohort. It also plans to continue its collaborative approach with patients, engaging with the Lived Experience Advisory Panel in interpreting results emerging from this dataset. Moving forward, IPCOR is planning its next phase of the project, IPCOR 2.0. This will be a prospective, longitudinal, multi-centre clinical quality registry and biorepository.
- Prostatic Neoplasms
- REGISTRIES
- Ireland
Data availability statement
Data are available upon reasonable request. The IPCOR dataset is available for access through a federated model. External researchers will contact the IPCOR project at ipcor@ucd.ie and be given access to a comprehensive data dictionary outlining the data available in the IPCOR dataset. The researchers will use this data dictionary to prepare their research proposal which will be reviewed by the IPCOR data access committee and approved by the IPCOR steering committee. Once ethical approval is obtained for the research project, the researchers can request dummy datasets and the necessary information to prepare their code for analysis. The code will be run by IPCOR staff members at UCD and the results will be provided to the external researcher. Full details are available in the data access section at www.ipcor.ie.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THE STUDY
Extensive and representative data collection from both public and private sectors, covering a diverse range of healthcare settings across Ireland.
Alignment with international standards, such as the International Consortium for Health Outcomes Measurement, allows for meaningful comparisons with global prostate cancer registries, enhancing the relevance of the findings.
Incomplete data capture may introduce bias, although robust methods were employed to maximise coverage, ensuring a representative sample of the majority of prostate cancer cases in Ireland.
Findings are specific to the Irish healthcare context, which may limit generalisability, although the inclusion of both public and private sectors reflects diverse healthcare practices, offering valuable insights for similar systems.
Data may become outdated as medical practices and diagnostic technologies evolve, although the future Irish Prostate Cancer Outcomes Research 2.0 phase will address this by collecting data on new patients in a contemporary context, ensuring continued relevance.
Introduction
Prostate cancer (PCa) is the most commonly diagnosed cancer in Ireland and accounts for almost 30% of total cancer cases in men.1 The National Cancer Registry Ireland (NCRI) reported the annual average incidence to be 3980 cases from 2019 to 2021.1 This translates to a 1 in 9 (11%) risk of developing PCa before the age of 75. From 2019 to 2021, PCa accounted for 623 deaths annually on average, making it the second most common cause of cancer death.1 Ireland ranks seventh globally and fourth in Europe in Age-adjusted incidence rates, with 99.8 cases per 100 000 population annually.2
Time trend data from the NCRI shows a significant increase in PCa incidence, from around 1000 annual cases in the early 1990s to over 3600 in 20113 and 4071 in 2021.4 These increases have, in part, been due to the use of opportunistic screening using the Prostate-Specific Antigen (PSA) test to diagnose PCa at an earlier stage, which led to the diagnosis of many indolent cancers that may not have presented symptomatically during the man’s lifetime. With a changing disease and demographic profile and improving treatments, the 5-year survival has increased significantly from 66% for patients diagnosed from 1994 to 1998 to 93% for those diagnosed from 2014 to 2018.3
Due to increasing incidence and improving survival rates, the number of men living with PCa in Ireland has increased year on year, with an estimated 46 417 men with a history of PCa at the end of 2021.1 With PCa incidence projected to reach 6869 annual cases by 2045, based on population ageing alone,5 the prevalence is expected to continue to increase. These changing patterns in PCa burden present significant challenges for service planning and patient care. Nevertheless, routine incidence and survival data are not sufficient for measuring the quality of care, as PCa is increasingly characterised as a chronic rather than acute disease. Longitudinal clinical and patient-reported outcomes (PROMs) data may provide the information necessary to inform and improve care for men living with the disease and the consequences of its treatments.
The Irish Prostate Cancer Outcomes Research (IPCOR) study was established to provide evidence-based data on men with PCa in Ireland and better inform future healthcare delivery, knowledge of the disease and best use of healthcare innovations and resources. IPCOR gathered detailed clinical and patient-reported data throughout the patient’s journey—from diagnosis through treatment and beyond. This data will improve the understanding of how the disease affects men throughout their lives. The findings will provide evidence for improving care and optimising the use of healthcare resources. Another key aim of the project is to share findings with the public, particularly men with PCa and their families. The large population-based PiCTuRE study investigated the treatment decision-making, treatment side-effects, well-being and health-related quality-of-life in men living with PCa on the island of Ireland.6–8 However, there is limited long-term data, in Ireland or internationally, tracking men’s experiences from diagnosis throughout their treatments and beyond. This lack of information means that physicians are unable to inform men of their expected outcomes with confidence. Our ambition is that in the future, men diagnosed with PCa in Ireland and their physicians will be able to use the IPCOR data to make informed decisions about treatments and understand the expected outcomes.
IPCOR specific objectives:
To conduct a unique, prospective, longitudinal clinical registry and patient-reported outcomes on men diagnosed with and treated for PCa in Ireland.
To establish a population-based, national database of men with incident PCa to provide a framework for the prospective collection of comprehensive and high-quality clinical information and patient-reported outcomes.
To assess the process and quality of care and clinical cancer outcomes in men diagnosed with PCa.
To assess men’s experiences of care, functional and psychological well-being, and health-related quality of life across the cancer journey.
To provide evidence-based data and recommendations to clinicians, hospitals, decision-makers and the National Cancer Control Programme in Ireland.
To disseminate the information to the public, including patients with cancer support groups and patients themselves.
To assess between-hospital and regional differences in clinical and patient-reported outcomes and experiences to inform initiatives to ensure parity of national access and standards of care.
To benchmark national results with similar international studies, particularly from the UK, Australia and New Zealand.
This paper aims to describe the IPCOR cohort and introduce it as a resource for the research community, with the goal of improving care for men with PCa in Ireland and globally.
The Irish healthcare system has a two-tier structure, where patients access care through either the public system or private healthcare providers. This allows for a detailed comparison of outcomes between public and private sectors, which is impossible in many countries. Additionally, the establishment of Rapid Access Prostate Clinics (RAPCs) in public hospitals since 2009 has streamlined the diagnostic process, offering structured and timely access to PCa diagnostics. However, disparities in access to advanced diagnostic tools and treatment are still evident between the public and private sectors, providing valuable insight into healthcare inequities. The IPCOR study, which comprehensively covered both public and private sectors, is well-positioned to offer insights that are relevant not only to Ireland but also to other countries with ageing populations and mixed healthcare systems.
Project background and methods
The IPCOR study collected prospective longitudinal clinical data on men newly diagnosed with PCa in 16 hospitals across Ireland from February 2016 to January 2020. It was carried out by a collaborative research partnership of the NCRI, Health Research Board Clinical Research Facility Galway and Clinical Research Development Ireland. The study received €1.74 million in funding over 6 years from The Movember Foundation in partnership with the Irish Cancer Society.
Currently, around two-thirds of men with PCa are diagnosed through the National Cancer Control Programme (NCCP)—designated cancer centres, via their RAPCs, directly through acute care or outpatient Urology clinics. To maximise registrations and data capture with the available funding, IPCOR registered men and collected data in six of the eight NCCP-designated public cancer centres, two additional public hospitals and seven private hospitals (table 1). Additionally, radiotherapy data was collected from St Luke’s Radiation Oncology Network. This selection of participating hospitals was designed to achieve maximum heterogeneity by ensuring coverage of hospitals from different geographical regions, diverse patient volumes and both public and private healthcare sectors. While not exhaustive, this list represents an intentional effort to provide a representative cross-section of PCa care in Ireland rather than a convenience sample.
Hospitals in IPCOR
Ethical and hospital-specific approvals for the study were obtained at each participating hospital. The NCRI is a publicly appointed body established in 1991 to collect and classify information on all cancer cases in Ireland. Its functions were laid down in legislation in 1991, with an amendment in 1996. The NCRI is mandated to promote and facilitate the use of the data thus collected in approved research and the planning and management of services. NCRI recruited and assigned research officers to participating hospitals. The officers were trained to identify newly diagnosed patients with PCa eligible for inclusion in the study and collect a comprehensive clinical dataset on those men.
The case ascertainment system used by the research officers used the processes already in place in the NCRI and were augmented by specific arrangements in individual hospitals. To obtain a list of newly diagnosed patients with PCa from each of their assigned hospitals, research officers used a combination of the following options:
Access pathology reports.
Attend multi-disciplinary team (MDT) meetings and record the newly diagnosed patients.
Access clinic list from RAPCs.
Access the clinic list from the clinical research nurse.
Access consultant list in private hospitals from administrators.
Access list through hospital systems such as hospital patient administration systems, radiotherapy clinic records, chemotherapy clinic records and local hospital in-patient episode records.
The core of the case ascertainment system was pathology reports, with over 95% of PCa cases being histologically diagnosed. All histopathology laboratories from public and private hospitals send copies of all cancer pathology reports to the NCRI shortly after histological diagnosis. Research officers cross-checked their list of newly diagnosed patients with PCa from their hospitals with the quarterly list produced by the NCRI to ensure that their list was comprehensive and that they had not missed any eligible men. Men could be registered in either their diagnostic hospitals or treatment hospitals.
Once eligible men were identified, the research officers registered their demographic details. Subsequently, the research officers collected a large dataset on each man enrolled in the study, as specified in the study protocol, including demographic details, clinical management, diagnostic pathology, treatment pathways, complications of treatment, recurrence of the disease and any follow-up treatments, as well as their long-term outcomes.
IPCOR aligned its data collection with the International Consortium for Health Outcomes Measurement (ICHOM) guidelines,9 the Prostate Cancer Outcomes Registry Australia and New Zealand (PCOR-ANZ),10 and the TrueNTH Global Registry11 to allow for international comparisons. A subset of registered men were invited to participate in a PROMs sub-study. Men were invited to complete questionnaires such as EPIC-26, EORTC-QLQ-C30, EQ-5D-5L and SCNS-SF34, as well as additional sociodemographic questions.
Follow-up data collection for the IPCOR cohort focuses on survival outcomes. Clinical PROMs data collection ceased in 2020. However, survival data continues to be updated through collaboration with the NCRI. This collaboration allows for the ongoing collection of mortality data via national death records. The latest follow-up for survival was conducted in May 2024.
In this study, quality metrics are defined as clinical process measures such as timeliness of care, adherence to clinical guidelines and outcomes. PROMs are also considered a quality matrix encompassing functional outcomes (urinary, bowel, sexual health), psychological well-being and overall quality of life, assessed through validated tools.
Patient and public involvement statement
From the outset of the IPCOR project, patients were involved in the research process. A Men Against Cancer (MAC) patient representative was an integral member of the IPCOR steering committee, ensuring patient perspectives were embedded in decision-making from the earliest stages. The project objectives and outcome measures were developed with input from men involved in MAC. Patients also gave their feedback on the recruitment strategy for the PROMs sub-study. They helped to refine recruitment materials and processes, providing consultation regarding the burden and the time required to participate in the research.
An essential component of the project was the establishment of the Lived Experience Advisory Panel (LEAP). This panel was integrated into the project’s governance structure to ensure patient insights directly informed research interpretation. Going forward, IPCOR plans to continue this collaborative approach, engaging with LEAP in choosing what information to share, when, and in what format to ensure the dissemination of results is meaningful and accessible to the broader patient community.
IPCOR aims to further strengthen its collaboration with patient groups and enhance patient involvement in all aspects of the research process. This ongoing partnership is crucial for maintaining a patient-centred approach and ensuring that research outcomes are aligned with patient needs and priorities.
Cohort description and findings to date
In total, IPCOR registered 6816 men. In the two full years of registration in the study, 2016 and 2017, IPCOR registered 2196 and 2749 men, respectively, which accounted for 63% and 74% of all new PCa cases diagnoses in Ireland, as registered by NCRI3 (table 2). In 2018–2019, the research officers mainly focused on completing follow-ups for the men already registered.
Number of men registered in IPCOR in each year of the study
Demographics
Table 3 summarises the demographic characteristics of the IPCOR cohort. Men had a median age of 67 years at diagnosis, with nearly 50% under retirement age when diagnosed with PCa. This indicated that a large proportion of men had to balance their working life with their diagnosis and subsequent treatment. Men in this age group are also likely to have dependent children. Married men were the largest category, accounting for 68% of the cohort. More men were recorded as living in urban areas (55%) than living rural (43%). The median distance from men’s homes to their diagnosing hospital was 39.1 Km. The social deprivation index is an area-based deprivation measure incorporating information from the national census. It is assigned to populations and patients based on their place of residence in Ireland and not assigned at an individual level. It showed that roughly 20% of men fall in each quintile of the deprivation index, indicating that the cohort represents the overall population. The majority of biopsies were conducted in public hospitals (65%), highlighting the accessibility of these facilities in providing diagnostic services, with a significant number also performed in private settings (34%), reflecting the diverse healthcare utilisation patterns in Ireland.
Demographic and socioeconomic characteristics of the IPCOR cohort (n=6816)
Diagnostics
Table 4 summarises the clinical and diagnostic characteristics of the cohort. PSA levels at diagnosis varied widely, with a median of 7.68 ng/mL, indicating a broad range of disease presentation from minimal to highly elevated levels. Most diagnoses were made through opportunistic screening, reflecting current trends in early detection strategies. Transrectal ultrasound-guided biopsy was the predominant method used, accounting for 86% of all biopsies, underscoring its role as the standard practice for PCa at that period. While most patients were evaluated using MRI (78%), only 30% were assessed before diagnosing biopsy.
Clinical and diagnostic characteristics of the IPCOR cohort (n=6816)
Disease characteristics
Table 4 also summarises some of the disease characteristics of the IPCOR sample. Approximately one-third of the sample (34%) were diagnosed with Gleason 3+3 disease, and less than 1% were diagnosed with Gleason 5+5. Clinical T staging highlights a substantial number diagnosed with locally advanced disease (16%). Lymph node and metastasis statuses predominantly indicate localised disease, with the majority being N0 (65%) and M0 (64%), respectively. Nearly 60% of cases were discussed at MDT, emphasising the collaborative approach in patient management.
Patient reported outcomes measures
PROMs were collected in two waves: the first in 2016–2017 and the second in 2019. A total of 2768 questionnaires were distributed across both waves, and 1248 were returned (45.1%). Of these, 873 were considered valid, representing 12.8% of the total cohort and 31.5% from approached patients.
In the first wave (2016–2017), three standardised questionnaires (EPIC-26, EORTC-QLQ-C30 and EQ-5D-5L) were distributed. A total of 1570 questionnaires were sent out, 472 of which were returned (30.1%), and 345 were deemed valid for analysis, resulting in a valid response rate of 22% of approached patients.
In the second wave (2019), the same three questionnaires, along with the SCNS-SF34 to assess unmet supportive care needs, were circulated to additional patients. In this wave, 1198 questionnaires were sent out, with 776 returned (63.9%) and 528 considered valid, yielding a valid response rate of 44% of approached patients.
Treatment
Table 5 summarises the treatment strategies in the IPCOR cohort. Radical prostatectomy was performed in 25% of the cases. The median time from diagnosis to surgery was 117 days. Among the surgical cases, 56% were performed using robot-assisted techniques, 36% were open surgeries and 3% were laparoscopic. Nerve-sparing procedures were performed in 42% of the surgeries. Additionally, 30% of the cohort received radiotherapy. Of those receiving radiotherapy, 78% had external beam therapy, 15% underwent brachytherapy and 6% received both external beam and brachytherapy. The median time to treatment was 203 days for external beam and 198 for brachytherapy. Chemical Aandrogen Deprivation Therapy (ADT) was administered to 22% of the cases, and chemotherapy was given to 3%. The median time from diagnosis to ADT was 82 days. It is important to note that active surveillance was not directly captured in our registry as a separate treatment option but can be inferred from the absence of other active treatment documentation.
Treatment Data for the IPCOR Cohort
Follow-up
The most recent follow-up of the IPCOR cohort took place in May 2024, focusing on survival outcomes through an ongoing collaboration with the NCRI. By linking the cohort with national death records, we captured updated mortality data. As of the 2024 follow-up, 1027 deaths were recorded, out of which 252 cases were confirmed as PCa-related, representing 3.7% of the total cohort of 6816 men diagnosed with PCa.
Discussion
The IPCOR project curated the first cancer-specific registry in Ireland, capturing up to 74% of all PCa-diagnosed cases during its active period. This comprehensive dataset includes patient data from both public and private healthcare sectors, providing a robust foundation for understanding and improving PCa care. With its extensive dataset covering a wide range of aspects related to the diagnosis, treatment and outcomes of PCa, IPCOR is an invaluable resource for studies in Ireland and globally. Following the ICHOM guidelines, IPCOR aligns with other PCa registries. This alignment facilitates international comparisons, enhancing the applicability and transferability of the findings.
Moreover, IPCOR stands out as the first large-scale, comprehensive PCa study in Ireland. It not only provides crucial evidence on current practices in PCa care but also has the potential to drive significant improvements in its management and treatment. The overview presented here underscores the extensive data collected through the IPCOR project, highlighting its pivotal role in advancing PCa research and care.
To date, the IPCOR study has successfully achieved several of its key objectives, while others are ongoing, with analyses and publications currently underway. A comprehensive national registry has been established, capturing detailed clinical data from 6816 men diagnosed with PCa across 16 hospitals in Ireland. This forms the foundation for further analyses and ongoing follow-up. Key metrics on diagnostic procedures, treatment pathways and quality of care have been analysed alongside PROMs data from 873 men, providing valuable insights into quality of life.
These findings are being finalised and prepared for publication. As part of both current and future analyses, we plan to investigate diagnostic and treatment utilisation patterns across different PCa risk groups to understand variations in care, particularly with respect to imaging, including MRI use, biopsy methods and treatment choices. This will provide more detailed insights into how risk stratification affects clinical decisions and outcomes, helping to optimise care pathways and reduce unnecessary interventions and costs, particularly for low-risk patients. Additionally, we are exploring disparities in access to diagnosis and treatment across socioeconomic groups and geographical regions, ensuring that our findings inform healthcare policies to reduce inequities in access and outcomes. We also use PROMs data to assess quality of life, functional well-being and treatment experiences. This will allow for a deeper understanding of how different treatments and care pathways impact the day-to-day lives of men diagnosed with PCa, informing patient-centred care strategies. Early results have already been shared with clinicians, hospitals and policy-makers, informing practice guidelines and policies. In addition, IPCOR has actively engaged with patient advocacy groups and involved patients in research interpretation, ensuring their perspectives are integrated into the study.
The preliminary findings presented in this article provide several interesting insights. In Ireland, opportunistic PSA screening for early PCa is used, but no national screening programme exists.12 13 A rapid access diagnostic service exists in eight publicly funded centres and offers assessment with a Consultant Urologist within 20 working days. Therapeutic services are provided in eight publicly funded surgical centres and four radiotherapy centres. Additional services exist in smaller public hospitals and in the private sector.
Despite the absence of a national screening programme in Ireland, only a small number of patients presented with clinical symptoms related to PCa. Approximately 70% of patients were diagnosed following an opportunistic PSA test. It is important that public policy reflects this and that men at risk be educated about the importance of PSA testing in the absence of symptoms. Despite having private health insurance, these data show that most patients attended the public rapid access service overall, demonstrating the success of this national initiative, which started in 2009.14 15 This has largely corrected the inequity in access to care that was present historically.16
The diagnosis of Gleason 3+3 is an important measure that reflects the modern diagnostic pathway. Appropriate testing, pre-biopsy MRI imaging and targeted biopsies should all ensure a low detection rate of clinically insignificant disease.17 However, one-third of all PCa cases diagnosed in Ireland are Gleason 3+3 disease, which rises to 45% in men under 65 years of age. This raises questions regarding clinical decision-making, pathological services and access to modern diagnostic services. Over-diagnosis of PCa is expensive; it does harm and subjects men to years of hospital visits and repeated biopsies.17
Data demonstrate that men have access to multiparametric MRI imaging, with almost 80% of all men ultimately receiving one. However, only a minority had their MRI before their biopsy, and in most cases, the MRI was not used to direct their biopsy. Those who attended private hospitals with insurance were three times more likely to have a pre-biopsy MRI, allowing for targeted biopsies. This demonstrates poor timely access to MRI Imaging in Ireland, often resulting in over-biopsy and over-diagnosis of PCa, primarily a low-risk disease. The data also indicate that the vast majority of men undergo transrectal prostate biopsies. Although this was the gold standard for PCa diagnosis during the data capture period, this method may lead to infectious and haemorrhagic complications alongside false-negative findings.18
Despite its strengths, the IPCOR registry has several limitations. First, it did not achieve complete coverage, missing PCa cases. This incomplete data capture could introduce biases if the non-captured cases differ systematically from those included. However, the registry still captures most cases (up to 74% in fully active years), and sites were selected to represent the Irish healthcare system and the Irish population. Hence, IPCOR provides a robust and comprehensive dataset representative of the broader Irish population, ensuring the findings remain significant and impactful for understanding and improving PCa care in Ireland.
Another limitation in this context is the relatively low response rate for the PROMs cohort. Only 13% of the total cohort and 31.5% of approached patients completed and returned valid PROMs questionnaires, which may limit the generalisability of the findings from the PROMs data. Several factors contributed to this low response rate, including the voluntary nature of PROM study participation, the timing and extent of questionnaire distribution and the burden of completing comprehensive surveys. This may result in selection bias if those who responded differ from those who did not. Nevertheless, the data collected still offer valuable insights into the quality of life and unmet needs of patients, and these findings will be key in guiding improvements in patient-centred care. Detailed publications regarding PROMs data are currently being prepared, providing valuable insights into the functional and psychological well-being of patients with PCa.
Third, while IPCOR provides extensive data specific to Ireland, the healthcare system, diagnostic pathways and treatment protocols may differ from those in other countries. This context-specific nature of the data may limit the generalisability of the findings internationally. However, by aligning with ICHOM guidelines and other Movember-funded PCa registries, IPCOR facilitates meaningful international comparisons and collaborations, enhancing the applicability and relevance of its findings in a global context.
Finally, the data’s time sensitivity is a notable limitation. The practices, technologies and healthcare policies related to PCa care are continually evolving, which means some findings may become outdated as new methods are developed and adopted. However, IPCOR is dedicated to continually updating the follow-up data for this cohort and informing on long-term outcomes. The project will maintain its collaborative approach by working closely with patients and incorporating feedback from the Lived Experience Advisory Panel to interpret emerging results. Looking ahead, IPCOR is preparing for its next phase, IPCOR 2.0, which will be a longitudinal, multi-centre clinical quality registry and biorepository in Ireland.
To conclude, the IPCOR study has created a comprehensive and invaluable dataset that sheds light on the diagnosis, treatment and outcomes of PCa in Ireland. IPCOR is an essential resource for improving PCa care by providing extensive clinical and patient-reported information. The continuous development of the IPCOR dataset, which is aligned with international standards, ensures its ongoing relevance and impact. IPCOR seeks collaboration with the global cancer research community to leverage this resource, furthering PCa research and enhancing patient outcomes worldwide.
Data availability statement
Data are available upon reasonable request. The IPCOR dataset is available for access through a federated model. External researchers will contact the IPCOR project at ipcor@ucd.ie and be given access to a comprehensive data dictionary outlining the data available in the IPCOR dataset. The researchers will use this data dictionary to prepare their research proposal which will be reviewed by the IPCOR data access committee and approved by the IPCOR steering committee. Once ethical approval is obtained for the research project, the researchers can request dummy datasets and the necessary information to prepare their code for analysis. The code will be run by IPCOR staff members at UCD and the results will be provided to the external researcher. Full details are available in the data access section at www.ipcor.ie.
Ethics statements
Patient consent for publication
Ethics approval
Ethics approval for the IPCOR project was obtained from all participating hospitals, as outlined in Table 1 provided in the Methods section. The ethics approval numbers and dates for each hospital are detailed alongside the hospital names. Some hospitals operate under joint ethics committees and, as such, share the same ethics approval reference numbers. University College Dublin issued an ethical waiver (LS-E-22-131-GALVIN) to allow the use of the IPCOR dataset within the university. Patient consent was not required for the collection of clinical patient data, as this was carried out under the auspices of the National Cancer Registry Ireland (NCRI). The NCRI has permission under the Health (Provision of Information) Act 1997 to collect and hold data on all persons diagnosed with cancer in Ireland. The use of these data for research is covered by the Statutory Instrument, which established the Registry Board in 1991. Consent was obtained from all patients participating in the PROMs sub-study.
Acknowledgments
The authors wish to extend their appreciation to the men who participated in the IPCOR project and the numerous hospitals and consultants involved for their invaluable contributions. We thank the IPCOR Scientific Advisory Board, IPCOR team members, colleagues at the CRDI and HRB-CRFG. We also thank the National Cancer Registry Ireland for their support and collaboration. Additionally, we are grateful to our funders for their generous support. Any opinions, findings, conclusions or recommendations expressed are those of the authors and not necessarily those of the Irish Cancer Society or the Movember Foundation.
Footnotes
NG and CD contributed equally.
Contributors NG acted as guarantor. NG and CD contributed to the data analysis. NG, CD, AM, WF, WW, and DG contributed to the interpretation of data. NG and CD drafted the manuscript. All authors contributed to the concept and design of the manuscript, the revision of the manuscript and the approval of the final version.
Funding The Irish Prostate Cancer Outcomes Research Project, IPCOR14GAL, was supported by the Irish Cancer Society and the Movember Foundation. NG is a Movember Janssen Newman Fellow in Prostate Cancer Outcomes Research.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.