Tag: NBDF

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