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)
Author: Alexandra Kucher
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)
Comparing Health Outcomes for Women and Girls with Hemophilia and No Bleeding Disorder – Insights from the Patient Reported Outcomes Burdens and Experiences (PROBE) Study
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 or Had the Potential to Menstruate (WGPPM) questionnaire for PROBE study. (2025), Book of Abstracts. Haemophilia, 31: 21-109. https://doi.org/10.1111/hae.70032 Objective There is limited comparative quality-of-life (QoL) data… 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
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 to Menstruate (WGPPM) questionnaire for PROBE study. (2025), Book of Abstracts. Haemophilia, 31: 21-109. https://doi.org/10.1111/hae.70032 Objective The Patient Reported Outcomes, Burdens, and Experiences (PROBE) survey was first developed… Continue reading Development of Women, Girls, and People Who Have or Had the Potential to Menstruate (WGPPM) questionnaire for PROBE study
International Women’s Day 2025 – Time for Action!
On the 50th Anniversary of International Women’s Day, mark this celebration with us by participating in the PROBE Study. Contributing to this study will help us to accelerate action and break the silence for women with bleeding disorders! Let’s take a stand for the women and girls who have been overlooked in bleeding disorder research… Continue reading International Women’s Day 2025 – Time for Action!
Gene Therapy in Hemophilia A: the Impact of Valoctocogene Roxaparvovec on Patient Outcomes – Initial Results from Patient Reported Outcomes, Burdens and Experiences (PROBE) from the GENEr8-1 Trial
Skinner M, Chen E, Ibrahim Q, Kucher A, Germini F, Karimi M, Clearfield E , O’Mahony B , Jain M. Gene Therapy in Hemophilia A: the Impact of Valoctocogene Roxaparvovec on Patient Outcomes – Initial Results from Patient Reported Outcomes, Burdens and Experiences (PROBE) from the GENEr8-1 Trial. (Abstract). NHF (2023). Objective The Patient Reported… Continue reading Gene Therapy in Hemophilia A: the Impact of Valoctocogene Roxaparvovec on Patient Outcomes – Initial Results from Patient Reported Outcomes, Burdens and Experiences (PROBE) from the GENEr8-1 Trial
Initial results of the impact of valoctocogene roxaparvovec on pain occurrence and interference: Insights from PROBE
Skinner M, Chen E, Kucher A, Germini F, Karimi M, Clearfield E , O’Mahony B , Jain M. Initial results of the impact of valoctocogene roxaparvovec on pain occurrence and interference: Insights from PROBE. (Abstract). NHF (2023). Introduction People with severe haemophilia A (PwSHA) commonly present with intramuscular bleeding and hemarthrosis, leading to acute and chronic… Continue reading Initial results of the impact of valoctocogene roxaparvovec on pain occurrence and interference: Insights from PROBE
Initial results of the impact of valoctocogene roxaparvovec on pain occurrence and interference: Insights from PROBE
Skinner M, Chen E, Kucher A, Germini F, Karimi M, Clearfield E , O’Mahony B , Jain M. Initial results of the impact of valoctocogene roxaparvovec on pain occurrence and interference: Insights from PROBE. (2023), CCS_Book of abstracts. Haemophilia, 29: 3-53. https://doi.org/10.1111/hae.14781 Introduction People with severe haemophilia A (PwSHA) commonly present with intramuscular bleeding and hemarthrosis,… Continue reading Initial results of the impact of valoctocogene roxaparvovec on pain occurrence and interference: Insights from PROBE
