Brennan F, Clearfield E, Kucher A, Colle Y, Brito del Pino Mouro A, Wilton P, Skouw-Rasmussen N, Ziemele BM, Rotellini D, Delaney M, Curtis RG, O’Mahony B, Page D, Iorio A, Germini F, Skinner MW. Advancing global data collection for women with bleeding disorders: early insights from the PROBE WBD module. Haemophilia. 2026;32:4-224. Abstract PP-399.… Continue reading Advancing Global Data Collection for Women with Bleeding Disorders: Early Insights from the PROBE WBD Module
Tag: 2026
Patient-Reported Outcomes in Hemophilia in Kosovo: Results from the PROBE Questionnaire
Svirca I, Kukaj E, Svirca L, Rotellini D, Harvey-Simi K, et al. Patient-reported outcomes in hemophilia in Kosovo: results from the PROBE questionnaire. Haemophilia. 2026;32:4-224. Abstract PP-317. doi:10.1111/hae.70232. Introduction National-level patient-reported outcomes (PROs) for people with hemophilia (PWH) in Kosovo are limited. The PROBE (Patient-Reported Outcomes, Burdens and Experiences) questionnaire captures treatment patterns, pain, function,… Continue reading Patient-Reported Outcomes in Hemophilia in Kosovo: Results from the PROBE Questionnaire
Development of a refined data dashboard for PROBE: Enhancing data interpretation and advocacy support for national patient organizations
Kucher A, Clearfield E, Curtis RG, Delaney M, Germini F, Iorio A, O’Mahony B, Page D, Rotellini D, Skinner MW. Development of a refined data dashboard for PROBE: enhancing data interpretation and advocacy support for national patient organizations. Haemophilia. 2026;32:4-224. Abstract FP-038 (514). doi:10.1111/hae.70232. Introduction The PROBE (Patient-Reported Outcomes, Burdens and Experiences) study has collected… Continue reading Development of a refined data dashboard for PROBE: Enhancing data interpretation and advocacy support for national patient organizations
Adapting the Patient Reported Outcomes Burdens and Experiences (PROBE) Study to Measure Quality of Life in People with von Willebrand Disease (VWD)
Clearfield E, Brennan F, Kucher A, Skouw-Rasmussen N, Ziemele B, Rotellini D, Delaney M, Curtis RG, O’Mahony B, Page D, Iorio A, Germini F, Skinner MW. Adapting the Patient Reported Outcomes Burdens and Experiences (PROBE) Study to Measure Quality of Life in People With von Willebrand Disease (VWD).Poster presented at: WFH 2026 World Congress; 2026… Continue reading Adapting the Patient Reported Outcomes Burdens and Experiences (PROBE) Study to Measure Quality of Life in People with von Willebrand Disease (VWD)
Bridging the Gap: Real-World Quality of Life Differences Between People With and Without Hemophilia in Malta
Chatzifragkou I., Gauci J. S., Gauci J. M., Cilia J., Gatt A., Kucher, A., Skinner, M. W. (2025, August). Bridging the gap: real-world quality of life differences between people with and without hemophilia in Malta. (2026), Abstract PO079. Haemophilia, 32: 4-224. https://doi.org/10.1111/hae.70195 Introduction The Patient-Reported Outcomes, Burdens and Experiences (PROBE) questionnaire captures the real-world impact of hemophilia from… Continue reading Bridging the Gap: Real-World Quality of Life Differences Between People With and Without Hemophilia in Malta
