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. doi:10.1111/hae.70232.
Introduction
Since 2014, the PROBE (Patient Reported Outcomes, Burdens, and Experiences) Study has generated global patient-reported data to compare health outcomes and quality of life (QoL) across people with haemophilia and control populations. However, PROBE was originally designed primarily for men, leaving a substantial knowledge gap for women with bleeding disorders (WBD), including women and girls with haemophilia A or B, carriers, and those who have or had the potential to menstruate. Limited comparative Quality of Life (QoL) data, together with a longstanding pattern of underdiagnosis and misdiagnosis, highlight the need for a dedicated data-collection framework. This project aims to expand PROBE to better capture the lived experiences and health outcomes of WBD.
Methods
Building on earlier PROBE analyses, a structured enhancement process began in 2024. A targeted literature review and conceptual framework exercise identified domains insufficiently captured in the current PROBE instrument, including menstrual bleeding patterns, gynaecological complications, access to care, emergency room utilisation, reproductive decision-making, and impacts on social and leisure activities. Eleven new WBD-specific questions were developed and integrated following consultation with a global expert working group representing the World Federation of Hemophilia (WFH), European Haemophilia Consortium (EHC), Coalition of the Americas (CoA), National Bleeding Disorders Foundation (NBDF), and Canadian Hemophilia Society (CHS). Of the 64 pilot participants, 33% completed the WBD module. The module launched as an online exploratory pilot on International Women’s Day 2025.
Results
Preliminary data reveals significant unmet needs among WBD. Participants reported a mean age of diagnosis of 20.45 years, with some reporting up to nine emergency department visits in the previous 12 months. The reported average menstrual period length was 10.6 days. Respondents also described moderate to significant impacts of their bleeding diagnosis and symptoms on decisions regarding childbearing and participation in social or leisure activities. Early findings from carriers, individuals with factor and platelet disorders, and those with extremely rare bleeding disorders underscore the diversity and severity of challenges experienced.
Conclusion
Early insights from the WBD module reinforce the necessity of integrating a dedicated WBD component into the core PROBE study. Enhanced, inclusive data collection will support more accurate understanding and inform targeted advocacy, research, management, and treatment strategies for this underserved population.
Poster: HERE
