Periodic Reporting for period 5 - PIONEER (Prostate Cancer DIagnOsis and TreatmeNt Enhancement through the Power of Big Data in EuRope)
Periodo di rendicontazione: 2022-05-01 al 2023-10-31
Prostate Cancer (PCa) is the second most common cancer among men in Europe. Despite this, we still don’t know enough about what causes it and how to best categorize patients for treatment. Additionally, important information from doctors and patient experiences isn’t being effectively used to improve patient care. We need to better understand PCa at all stages, improve how we categorize patients when they are diagnosed, and standardize treatment outcomes based on real-life data. To address these issues, the PIONEER project has taken a unique approach:
1. Identifying Gaps: Experts have identified the most critical gaps in current knowledge about prostate cancer.
2. Setting Priorities: They conducted a research priority exercise to determine which questions are most important to patients, doctors, and other stakeholders.
3. Gathering Data: PIONEER collected comprehensive data from clinical trials, large patient groups, electronic health records, and real-life patient data across Europe and beyond.
4. Integrating and Analyzing Data: The data has been combined, standardized, and analyzed using advanced methods.
Until its end in October 2023, PIONEER mapped over 100 relevant databases and made more than 40 available for research. This work resulted in 14 research papers, with many more studies initiated. The efforts will continue through the PIONEER+ initiative as part of the EAU’s UroEvidenceHub.
1. Identifying Gaps: Experts have identified the most critical gaps in current knowledge about prostate cancer.
2. Setting Priorities: They conducted a research priority exercise to determine which questions are most important to patients, doctors, and other stakeholders.
3. Gathering Data: PIONEER collected comprehensive data from clinical trials, large patient groups, electronic health records, and real-life patient data across Europe and beyond.
4. Integrating and Analyzing Data: The data has been combined, standardized, and analyzed using advanced methods.
Until its end in October 2023, PIONEER mapped over 100 relevant databases and made more than 40 available for research. This work resulted in 14 research papers, with many more studies initiated. The efforts will continue through the PIONEER+ initiative as part of the EAU’s UroEvidenceHub.
From the beginning to the end of the PIONEER project, significant progress was made in understanding of prostate cancer management. The project efficiently managed its goals, ensuring steady progress and fostering discussions about its long-term sustainability.
- PIONEER developed standardized definitions for key prostate cancer outcomes and diagnostic factors, which improved the understanding and treatment of the disease at various stages.
- PIONEER enabled access to and harmonized multiple large datasets, identifying 95 data sources and integrating 31 clinical datasets and 13 OMICS/Imaging/PROMS datasets into a comprehensive platform. This cutting-edge platform consolidated diverse, high-quality data, allowing for advanced analysis and better insights into prostate cancer.
- The project supported over a dozen research teams, organized studyathons, and streamlined the process for submitting research questions. It also provided updates to care guidelines, enhancing treatment options like Watchful Waiting.
- PIONEER established a stakeholder forum to address key evidence challenges, identified emerging evidence areas, and provided recommendations for expanding the platform's capabilities.
- Communication efforts were robust, including the creation of a project website, an active social media presence, patient brochures, animated videos, video interviews with project leads, articles, and poster presentations to keep the public informed.
- An ethical and legal framework was established to guide the use of big data from human participants, providing documents, advice, and support to ensure proper handling and sharing of information. This included developing templates for collaboration agreements, data-sharing policies, and memoranda of understanding with related projects
- Overall, PIONEER published 14 scientific articles, made policy papers available, and openly shared analytical tools.These efforts significantly advanced the understanding and management of prostate cancer, benefiting patients and healthcare providers alike.
- PIONEER developed standardized definitions for key prostate cancer outcomes and diagnostic factors, which improved the understanding and treatment of the disease at various stages.
- PIONEER enabled access to and harmonized multiple large datasets, identifying 95 data sources and integrating 31 clinical datasets and 13 OMICS/Imaging/PROMS datasets into a comprehensive platform. This cutting-edge platform consolidated diverse, high-quality data, allowing for advanced analysis and better insights into prostate cancer.
- The project supported over a dozen research teams, organized studyathons, and streamlined the process for submitting research questions. It also provided updates to care guidelines, enhancing treatment options like Watchful Waiting.
- PIONEER established a stakeholder forum to address key evidence challenges, identified emerging evidence areas, and provided recommendations for expanding the platform's capabilities.
- Communication efforts were robust, including the creation of a project website, an active social media presence, patient brochures, animated videos, video interviews with project leads, articles, and poster presentations to keep the public informed.
- An ethical and legal framework was established to guide the use of big data from human participants, providing documents, advice, and support to ensure proper handling and sharing of information. This included developing templates for collaboration agreements, data-sharing policies, and memoranda of understanding with related projects
- Overall, PIONEER published 14 scientific articles, made policy papers available, and openly shared analytical tools.These efforts significantly advanced the understanding and management of prostate cancer, benefiting patients and healthcare providers alike.
The PIONEER project set out to advance prostate cancer care and improve patients' quality of life. It brought together leading experts, patient advocates, and data specialists to enhance our understanding of the disease. Together, they developed clear definitions for key outcomes and factors that clinicians should consider when treating prostate cancer, ensuring everyone agreed on these standards. Using advanced data tools like the OMOP data model, PIONEER built a sophisticated platform to collect and analyze a wealth of prostate cancer data. This platform integrates diverse, high-quality information in one accessible place, empowering clinicians to make informed decisions and address crucial questions about treatment strategies. A research committee ensures the process is well-regulated. PIONEER has already made significant contributions with 14 scientific publications and numerous policy papers, influencing how prostate cancer is managed. The project continues to drive research forward, aiming to refine treatment approaches and enhance healthcare efficiency. Ultimately, this effort benefits patients by providing better insights and support throughout their journey with prostate cancer.