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 and care. Too often, women with bleeding disorders go undiagnosed or misdiagnosed, leading to unnecessary complications. It’s time to collect the data, recognize womens’ experiences, and drive change.
What is Patient Reported Outcomes Burdens and Experiences (PROBE)?
PROBE is a validated and world recognized quality of life study, designed for patients, by patients to understand key outcomes, burdens and experiences. PROBE is now adapted to be used by women with bleeding disorders. A new module, launched today, builds on the existing PROBE Study to incorporate additional questions on gynecological bleeding and complications related to women and bleeding disorders. PROBE has been translated into 5 languages: English, French, Italian, Spanish, Portuguese and Russian to reach the most of the women’s population in the world. PROBE also collaborates with WFH, EHC, CoA and NBDF to support women with bleeding disorders.
Why It Matters:
- Women experience unique symptoms that require specific research and treatment.
- Accurate data helps improve diagnosis, care, and access to treatment.
- Raising awareness leads to stronger and improved policies.
What You Can Do:
- Participate in PROBE to share your experiences of living with a bleeding disorder.
- Amplify the conversation and spread awareness #IWD2025
- Partner with patient organizations and healthcare professionals to continue the conversation!
Every woman’s voice and experience matter. Let’s make bleeding disorders visible, countable, and treatable.
Join us in making a difference! [TBA]
#IWD2025 #AccelerateAction #DataForChange #BleedingDisorders
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 and care. Too often, women with bleeding disorders go undiagnosed or misdiagnosed, leading to unnecessary complications. It’s time to collect the data, recognize womens’ experiences, and drive change.
What is Patient Reported Outcomes Burdens and Experiences (PROBE)?
PROBE is a validated and world recognized quality of life study, designed for patients, by patients to understand key outcomes, burdens and experiences. PROBE is now adapted to be used by women with bleeding disorders. A new module, launched today, builds on the existing PROBE Study to incorporate additional questions on gynecological bleeding and complications related to women and bleeding disorders. PROBE has been translated into 5 languages: English, French, Italian, Spanish, Portuguese and Russian to reach the most of the women’s population in the world. PROBE also collaborates with the World Federation of Hemophilia (WFH), European Haemophilia Consortium (EHC), Coalitions of America (CoA) and National Bleeding Disorder Foundation (NBDF) to support women with bleeding disorders.
Why It Matters:
- Women experience unique symptoms that require specific research and treatment.
- Accurate data helps improve diagnosis, care, and access to treatment.
- Raising awareness leads to stronger and improved policies.
What You Can Do:
- Participate in PROBE to share your experiences of living with a bleeding disorder.
- Amplify the conversation and spread awareness #IWD2025
- Partner with patient organizations and healthcare professionals to continue the conversation!
Every woman’s voice and experience matter. Let’s make bleeding disorders visible, countable, and treatable.
Join us in making a difference! LINK
#IWD2025 #AccelerateAction #DataForChange #BleedingDisorders
Mark Skinner, President/CEO of the Institute for Policy Advancement, USA, and David Page, National Director of Health Policy at the Canadian Hemophilia Society, Canada, talk about the importance of data collection and patient-reported outcomes for enhancing the patient voice in healthcare decision-making. They discuss one data collection project in particular, called PROBE, and highlight how it can be used as an evidence-based tool by advocacy groups. https://shows.acast.com/amplify/episodes/episode-5
International Society on Thrombosis & Haemophilia (ISTH, SSC) 2020
Poster Abstract # PB 1012
Citation: Germini F, O’Callaghan S, Chai-Adisaksopha C, Curtis R, Frick N, Nichol M, Noone D, O’Mahony B, Page D, Stonebraker J, Skinner M, Iorio A. Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder – Insights from the PROBE Study [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1).
For Abstract Click HERE (PB 1012)
