There have been many projects on the effects of a bleeding disorder on a person’s life. However, they have either been narrow in scope or duration, and/or relied on provider-reported data.
NHF believes the viewpoint of affected individuals and families must be included in everything that can potentially impact their lives. MyBDC is the first community-powered registry that will gather information directly from affected individuals and their family members.
MyBDC will enable researchers to gain deeper insight into such topics as:
- The effect of HTC care on the community
- Mental health issues
- Family dynamics
- What issues help and hinder adherence
- Opioid use and substance use disorder
- The effectiveness of medical marijuana and other non-opioid treatments for pain