The National Hemophilia Foundation (NHF) has created a community-powered registry for people with bleeding disorders, MyBDC. MyBDC will help researchers understand what it means to live with a bleeding disorder from the perspective of the people who are affected, their siblings, partners, and caregivers. The goal of MyBDC is to improve quality of life (QOL), identify research questions important to community members, and add the communities voice to the conversation.
How MyBDC works:
- Registered participants receive an initial survey followed by annual surveys
- Surveys collect data such as demographics, bleeding history, experiences with treatment, etc.
- Shorter surveys may be sent periodically
Participants may opt out of any survey at any time. The information collected in MyBDC will always be reported in a de-identified and aggregate manner. NHF will never share MyBDC personal information with any third parties for marketing or any other purposes.
What MyBDC gives participants:
- Access to personal profile and survey responses through a personalized dashboard.
- Ability to compare their information anonymously with others in MyBDC
- Up-to-date and relevant education
- Research opportunities
More information, including how to enroll, can be found on NHF’s MyBDC website.
For an in-depth discussion about MyBDC, check out Bloodstream Media’s Ask the Expert podcast, featuring NHF’s head of research, Michelle Witkop, DNP, FNP-BC and Maria Santatella, MSN, RN-BC, CPHON research nurse.