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Latest from PROBE
The newest PROBE research, presentations, projects and announcements.
Advancing Global Data Collection for Women with Bleeding Disorders: Early Insights from the PROBE WBD Module Jun 7, 2026 - 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… … Continue reading Advancing Global Data Collection for Women with Bleeding Disorders: Early Insights from the PROBE WBD Module
Patient-Reported Outcomes in Hemophilia in Kosovo: Results from the PROBE Questionnaire Jun 7, 2026 - 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.… … 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 Jun 7, 2026 - 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:… … 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) Jun 7, 2026 - 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… … 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 Jun 7, 2026 - 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… … 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 May 20, 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… … 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) Sep 9, 2025 - 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:… … 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 Sep 2, 2025 - 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… … 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 Aug 29, 2025 - 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… … 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) Jun 25, 2025 - 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… … 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)
Comparing Health Outcomes for Women and Girls with Hemophilia and No Bleeding Disorder – Insights from the Patient Reported Outcomes Burdens and Experiences (PROBE) Study Jun 5, 2025 - Skinner M. W., Kucher A., Clearfield E., Curtis R. G., Germini F., Iorio A., Nichol M., Page D., Stonebraker J. Development of Women, Girls, and People Who Have… … Continue reading Comparing Health Outcomes for Women and Girls with Hemophilia and No Bleeding Disorder – Insights from the Patient Reported Outcomes Burdens and Experiences (PROBE) Study
Development of Women, Girls, and People Who Have or Had the Potential to Menstruate (WGPPM) questionnaire for PROBE study Jun 5, 2025 - Kucher A, Skinner M. W., Clearfield E., Brennan F., Rotellini D., Colle Y., Wilton P. A. Development of Women, Girls, and People Who Have or Had the Potential… … Continue reading Development of Women, Girls, and People Who Have or Had the Potential to Menstruate (WGPPM) questionnaire for PROBE study
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