Patient data are the foundation of clinical decisions and health policies—and they can play a transformative role in the lives of people with bleeding disorders. For many years, the bleeding disorders community asked for more and better data to help improve patient care, inform clinical decisions, and advocate for better support. The WBDR answers this need, and offers the global community the opportunity to mitigate the gap in availability, quality, and usability of patient data at both the national and regional level.
The important milestone of 10,000 PWH enrolled was realized one year earlier than anticipated. The WFH is deeply grateful for the participants who are contributing their data to enhance our understanding of patient care around the world.
During the past four years, the WFH has provided the community with several programs and resources related to the WBDR, including the following:
- WBDR Research Support Program which has funded 30 research projects
- WBDR HTC Funding Program which has supported 25 HTCs in their data collection activities
- Over 16 workshops offered in areas of education, data collection, and clinical evaluation
As the WBDR grows, more features and improvements are being introduced to the platform. At the WFH 2022 World Congress, the WFH launched myWBDR, a new patient mobile app which offers a health monitoring tool and a diary for PWH, and patient-reported outcome data for researchers and clinicians. The app is available in seven languages.
To find out more about how WBDR data can be used by researchers, treaters, and patient advocates to improve care for people with bleeding disorders, click here.
The WFH would like to thank all PWH and their caregivers, HTC staff, national member organizations (NMOs), and expert volunteers for continuing to be the backbone that nurtures and sustains the WBDR as a key global resource for advocacy, research, and empowerment of PWH.
If your HTC would like to join the WBDR, please contact us at [email protected]
Read the latest WBDR data report, click here.