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
Author: Alexandra Kucher
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
Thank You for Joining PROBE + WAPPS in Kuala Lumpur, WFH 2026
Dear colleagues and friends, Thank you for joining us at the PROBE + WAPPS Breakfast Meeting during the WFH Congress in Kuala Lumpur. We are grateful for your time, thoughtful questions, and continued support of the PROBE Study. Your engagement helps us continue raising awareness of hemophilia quality of life, patient-reported outcomes, and the importance… Continue reading Thank You for Joining PROBE + WAPPS in Kuala Lumpur, WFH 2026
Mapping outcomes to coreVWD: moving toward a fully reportable core outcome set to improve access to treatment for people with von Willebrand Disease (VWD)
Clearfield, E., Ayoub, E., Ziemele, B., Delaney, M., Youttananukorn, T., Coffin, D., Brennan, F., Kucher, A., Skinner, M. W., & James, P. (2025, August). Mapping outcomes to coreVWD: Moving toward a fully reportable core outcome set to improve access to treatment for people with von Willebrand disease (VWD) [Poster presentation]. National Bleeding Disorders Foundation (NBDF)… Continue reading Mapping outcomes to coreVWD: moving toward a fully reportable core outcome set to improve access to treatment for people with von Willebrand Disease (VWD)
Development of a WGPPM-Focused PROBE Survey: Addressing Underrepresentation in Patient-Reported Outcomes and Quality of Life Research
Kucher, A., Skinner, M. W., Clearfield, E., Brennan, F., Rotellini, D., Colle, Y., & Wilton, P. A. (2025). Development of a WGPPM-Focused PROBE Survey: Addressing underrepresentation in patient-reported outcomes and quality of life research [Poster presentation]. National Bleeding Disorders Foundation (NBDF) Annual Conference, Atlanta, GA, United States. Objective Women, Girls, and People with the Potential to Menstruate… Continue reading Development of a WGPPM-Focused PROBE Survey: Addressing Underrepresentation in Patient-Reported Outcomes and Quality of Life Research
Feasibility of Administering the Patient Reported Outcomes, Burdens and Experiences (PROBE) Questionnaire Through the Canadian Bleeding Disorders Registry (CBDR) and Comparison of Data From the Two Sources
F. Germini, C. Cossa, E. Trinari, et al. “ Feasibility of Administering the Patient Reported Outcomes, Burdens and Experiences (PROBE) Questionnaire Through the Canadian Bleeding Disorders Registry (CBDR) and Comparison of Data From the Two Sources.” Haemophilia (2025): . https://doi.org/10.1111/hae.70117 Introduction The Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire can be used to measure quality of life in persons with… Continue reading Feasibility of Administering the Patient Reported Outcomes, Burdens and Experiences (PROBE) Questionnaire Through the Canadian Bleeding Disorders Registry (CBDR) and Comparison of Data From the Two Sources
Mapping outcomes to coreVWD: moving toward a fully reportable core outcome set to improve access to treatment for people with von Willebrand Disease (VWD)
Clearfield, E., Ayoub, E., Ziemele, B., Delaney, M., Youttananukorn, T., Coffin, D., Brennan, F., Kucher, A., Skinner, M. W., & James, P. (2025). Mapping outcomes to coreVWD: Moving toward a fully reportable core outcome set to improve access to treatment for people with von Willebrand Disease (VWD) [Abstract]. ISTH. https://www.rpthjournal.org/issue/S2475-0379(24)X0006-0 Background The VWD treatment landscape… Continue reading Mapping outcomes to coreVWD: moving toward a fully reportable core outcome set to improve access to treatment for people with von Willebrand Disease (VWD)
