CVR is expected to be a longitudinal registry--this means that we expect it will continue for many years into the future. This will allow us to gain a deeper understanding of both physical and psychosocial issues facing our community. The information will be used to improve quality of life and clinical outcomes.
CVR is open to collaborations and strives to make establishing them as simple and transparent as possible. Researchers outside of NBDF (external researchers) may apply to have access to CVR’s de-identified and aggregated data to answer specific research questions. All research proposals will be managed by NBDF’s research department. Examples of external researchers that may apply to have access to limited de-identified and aggregate data include: researchers from federally funded hemophilia treatment centers, other non-profits, pharmaceutical industry, payors, and students.
Investigators interested in collaborations are invited to contact the NBDF Research Department at Research@hemophilia.org with details of the proposed collaboration. NBDF research staff will review new collaboration requests regularly based on feasibility.
All research findings resulting from information gathered through CVR will be communicated to participants through their CVR Personalized Dashboard. Benefits of future research activities are generally indirect. That is, research findings may benefit the bleeding disorder community in general but not individual participants.