Why the patient voice is important to research.
Your voice is at the center of MyBDC. This community-powered registry will help researchers understand what it really means to live with a bleeding disorder and how current treatments, therapies, and policies affect the community. MyBDC will collect information from the people directly affected: people with bleeding disorders, their parents, siblings, partners, and caregivers.
People who participate in MyBDC will share information consistently over several years through surveys. This will allow researchers to better understand how bleeding disorders affect individuals and their family members across their lifespan. It will also help participants understand their individual situation and how a bleeding disorder affects their life.
The confidential, deidentified aggregate data gathered through MyBDC will ultimately contribute to the goal of improving clinical outcomes and quality of life and identifying research questions important to the community.