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 by collecting information from the people directly affected: people with bleeding disorders, their siblings, partners, and caregivers.
MyBDC will request information from participants consistently and over several years – which will allow researchers to better understand how bleeding disorders affect individuals and their family members over their lifespan. The confidential, deidentified aggregate data will contribute to the ultimate goal of improving quality of life, identifying research questions important to the community, and will contributing to finding a cure.