Overview: What the research is about
My work centers on inherited bleeding disorders, a group that includes well-known conditions like haemophilia and less familiar ones such as von Willebrand disease. These disorders share a common challenge: a tendency to bleed more easily due to genetic factors that affect blood clotting. While the specifics of each disorder vary, the overarching goal of my research is to understand how these conditions manifest in real-world patients, how they are managed, and how new therapies can improve safety, quality of life, and long-term outcomes.
Historically, research in this field relied heavily on controlled clinical trials conducted in specialized centers. My team, however, emphasizes the value of real-world data gathered from diverse patient populations—including those with rare bleeding disorders and those who may not fit neatly into traditional trial criteria. In Ireland, this approach leverages robust patient registries, multidisciplinary clinics, and close collaboration with patient organizations to capture the full spectrum of experiences and outcomes.
Why Ireland is influential in this field
Ireland’s healthcare system provides unique opportunities for longitudinal observation and cross-disciplinary collaboration. By linking hematology, hepatology, dentistry, surgery, and primary care, researchers can trace how inherited bleeding disorders influence everyday life—from dental procedures to major surgeries, pregnancy, and aging. The country’s emphasis on standardized care pathways and data collection enhances the reliability of findings that can be translated beyond borders.
Key findings and their international impact
1) Real-world effectiveness of therapies: Real-world data are informing how well treatments work outside the controlled setting of trials. This includes how patients respond to factor replacement therapies, extended half-life products, and emerging non-factor therapies. Findings help refine dosing, reduce bleeding events, and improve safety profiles across diverse patient groups.
2) Personalised care models: Research points to the value of individualized treatment plans based on patient activity, joint health, history of bleeds, and genetic factors. Shared decision-making with patients leads to better adherence and outcomes, guiding international guidelines toward more flexible, patient-centered care.
3) Detection and management of rare bleeds: For conditions like von Willebrand disease, nuanced understanding of laboratory tests and clinical presentation supports more accurate diagnosis and targeted therapy. This reduces unnecessary interventions and optimizes resource use—lessening burden on healthcare systems worldwide.
4) Safety in invasive procedures: Data from Ireland contribute to best practices for dental work, surgery, and childbirth in people with bleeding disorders. The goal is to minimize bleeding complications without compromising timely care, a balance that resonates with clinicians everywhere.
From data to practice: translating findings globally
Turning research into practice involves clear communication with clinicians, patients, and policy makers. European and international collaborations help harmonize registries, align diagnostic criteria, and standardize outcome measures so a finding in Ireland is readily comparable to data from other regions. This harmonisation accelerates the adoption of evidence-based strategies, from preoperative planning to postoperative care and long-term joint management.
Looking ahead: what this means for patients
For people living with inherited bleeding disorders, the implications are tangible: fewer bleeds, safer surgeries, and more confidence in daily activities. As new therapies become available, Ireland’s research ecosystem will continue to test their applicability across different healthcare settings, ensuring that innovations translate into real-world benefits for patients worldwide.
Conclusion
In Ireland, research into inherited bleeding disorders is not just a national endeavor—it is a driving force in international practice. By marrying high-quality data with patient-centered care, our findings are helping clinicians worldwide refine therapies, optimize management, and improve outcomes for all who live with these conditions.
