Tag: WGwH

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

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