Unmet need in women who bleed

For years, women with bleeding disorders have been overlooked and underserved in terms of research and access to treatment. This must change. 

Supported by an unrestricted grant from CSL Behring, Haemnet’s Cinderella study looked to provide insights on and raise awareness of the unmet needs of women who bleed. 

Our methodology employed mixed methods including:

• A systematic review of the literature, focused on healthcare, socioeconomic factors and mental health
• A comprehensive cross-sectional online survey, exploring demographics, bleeds and their impact, family history, the diagnostic pathway and treatment

Small focus groups and one-to-one interviews designed to gather rich, qualitative data, conducted by our experienced researchers.

Almost 300 women within the bleeding disorders community responded to our survey, 17 of whom shared their personal stories and insights with us.

Results from the study identified ongoing issues and unmet needs for women who bleed.

In particular, access to treatment and care, delayed diagnosis, symptom recognition and the impact of their condition on day-to-day life, were key concerns. 

The study results have been disseminated widely:

• Presentation of study findings at international conferences 
• A symposium at the European Haemophilia Consortium’s 2022 Conference on Women with Bleeding Disorders 
• Two publications in peer-reviewed journals
• Short animations scripted from participants’ real-life stories
• Blogs and social media activity

The Cinderella study is now regularly cited in publications and presentations.