MyBDC collaborates with ATHN, the CDC, and is open to new partnerships.
MyBDC is expected to be longitudinal--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.
MyBDC is open to collaborations and strives to make establishing them as simple and transparent as possible. Researchers outside of NHF (external researchers) may apply to have access to MyBDC’s de-identified and aggregated data. All research proposals will be managed by NHF’s research department. Protocols will be evaluated by a multidisciplinary review committee that includes physicians, nurses, other experts, and members of the bleeding disorders community. 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, pharmaceutical industry, payors, and students.
Investigators interested in collaborations are invited to contact the NHF Research Department at MyBDC@hemophilia.org with details of the proposed collaboration. NHF research staff will review new collaboration requests regularly based on feasibility.
All research findings resulting from information gathered through MyBDC will be communicated to participants through their MyBDC 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.