Community Voices in Research

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.

Benefits for the Bleeding Disorders Community
Benefits for the Bleeding Disorders Community
Participants People with bleeding disorders and their immediate family members and caregivers
  • Access to the CVR Dashboard that lets them see their responses and compare anonymously to others
  • Opportunities to participate in specific research studies for compensation
  • Educational materials and information to share with family members, healthcare providers, and more.
Researchers Healthcare professionals and investigators who wish to learn more about a specific area. All research requests are reviewed prior to acceptance. The ability to send targeted surveys to CVR participants. All responses are reported back to them in a de-identified, aggregate (combined) manner to protect CVR participants’ privacy.

Resource Links

8031 West Center Road
Suite 301
Omaha, NE 68124

© National Bleeding Disorders Foundation 2024

Crafted by Firespring