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 | ||
|---|---|---|
| Participants | People with bleeding disorders and their immediate family members and caregivers |
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| 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. |
