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Patient-Reported Data

MyBDC Patient-Reported Data

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