Why the patient voice is important to research.
Your voice is the center of MyBDC. This patient-powered registry will help researchers understand how current treatments, therapies, and policies affect the bleeding disorders community. MyBDC will collect information from the people directly affected: people with bleeding disorders, their siblings, partners, and caregivers.
People who participate in MyBDC will share information consistently and over several years – which will allow researchers to better understand how bleeding disorders affect individuals and their family members across their lifespan. The confidential, deidentified aggregate data will contribute to the goal of improving quality of life, identifying research questions important to the community, and finding a cure.