1. What is CVR?
  2. What is the goal of CVR?
  3. Who can participate in CVR?
  4. How can I join CVR?
  5. How will CVR's data be gathered?
  6. How will my information in CVR's be protected?
  7. How will CVR benefit me as a participant?
  8. How will CVR benefit others within the bleeding disorders community?
  9. Why should YOU participate?
  10. How can I access the Personalized Dashboard?


What is 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.

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What is the goal of CVR?

CVR provides an important piece that is currently missing; the community’s voice and experiences to complement and enhance the value of the current data sets overall. The ultimate goal is to improve quality of life (QOL), identify research questions important to the community, and together contribute to finding a cure.

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Who can participate in CVR?

CVR is open to all adults affected by inherited bleeding disorders as well as non-affected family members (parents, spouses, grand-parents, siblings, and children).

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How can I join CVR?

CVR has transitioned to a new and improved platform. Click here to join CVR.

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How will CVR's information be gathered?

Participants complete a short enrollment survey. Once enrolled, they will receive a baseline survey followed by annual surveys which will ask the same information over time (longitudinally). These annual surveys (called Core Surveys) will look for patterns/trends/changes. Additional shorter surveys focused on specific areas of interest will be sent periodically. Participation will always be optional.

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How is my information in CVR's be protected?

CVR does not share your name, address, and other personal information with anyone else. All information reported will be de-identified (meaning your personal information will be removed) and aggregated (meaning all information is grouped and no individual information is reported by itself). CVR is voluntary. You always have the option of opting out of any survey.

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How will CVR benefit me as a participant?

  • Personalized dashboard: allows you to access to your personal profile and survey responses so that you can:
    • Follow trends, compare changes over time, and make informed decisions about your health care
    • Compare your information with the deidentified/aggregate information of others in CVR.
  • Education: access to information that is up-to-date and relevant and additional resources and research opportunities
  • Research opportunities: provides opportunities to participate in other research projects -both paid and unpaid
  • Personal CVR record: allows you to keep track of your medical information and health care providers which you can print and share with anyone of your choosing (dentist, emergency room, etc.)

All these benefits are voluntary, you can choose to take advantage of them or not -it is always your choice.

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How will CVR benefit others within the bleeding disorders community?

  • Focused education - NBDF’s education programs will use CVR to create materials based on patient-reported data
  • Informed advocacy - Gather evidence that will help NBDF and its Chapters in State and National advocacy efforts that defends affordable access to specialized centers and treatment
  • Efficient research - A nimble platform that facilitates implementation of research
  • Rapid research cycles - The ability to answer new questions quickly
    • Help researchers identify priority research topics important to the community
    • Rapid data collection
  • Aligned data sets - Complimenting other existing clinical research efforts
    • Provide the community’s voice not currently available anywhere else, giving researchers access to additional relevant and very important information

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Why should YOU participate?

  • To add your voice and experiences that will impact the future
  • So that you can direct decisions that will impact the future
  • To help researchers find answers that will impact the future, and eventually contribute to finding a cure
  • Because your voice matters!

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How can I access the Personalized Dashboard?

If you already have a login you can access your Personalized Dashboard.

CVR participants receive access to their Personalized Dashboard after enrolling and completing the Baseline Survey.

If you enrolled as an adult diagnosed with an inherited bleeding disorder or as the family member of one who does and completed the CVR Baseline Survey, you should have received an invitation via email to access your Personalized Dashboard. If you did not please email us at CVR@hemophilia.org

Still have Questions?

Contact: Maria E. Santaella, Director of Research Email: msantaella@hemophilia.org

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