Many exciting new medicines, devices and procedures have helped improve care for people with bleeding disorders. These advances have been possible because of new technologies, increases in funding and scientific programs. But most importantly, we’re seeing this progress because people with bleeding disorders and their loved ones, like you, have participated in research. For available clinical trials of bleeding disorders, visit ClinicalTrials.gov and search for your disorder.

NBDF has created a Clinical Trial Essentials Toolkit that provides the “must have” information about clinical trials: what they are designed to do, what to expect before and during, and what questions to discuss with your providers to decide if a trial is right for you.

Community Voices in Research

You can contribute to research, even if you do not wish to participate in clinical trials, by enrolling in Community Voices in Research (CVR). 

Community Voices in Research (CVR) is a partnership between the bleeding disorder community and NBDF! CVR is a community powered registry that will document the experiences of persons living with inherited bleeding disorders and their non-affected relatives over the years to offer a 360-view of what it is like to live with a bleeding disorder.

People who participate in CVR 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 CVR will ultimately contribute to the goal of improving clinical outcomes and quality of life and identifying research questions important to the community.