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The Importance of Patient-Reported Data

History

NHF devoted two years to the development of MyBDC, reaching out to multiple stakeholders in the bleeding disorders community, including affected individuals, chapter leaders, providers, researchers, payers and others, ensuring the needs of the community are incorporated into the initiative.

While there have been many research initiatives on the effects of a bleeding disorder on a person’s life, they have either been narrow in scope or duration, and/or relied on provider-reported data. MyBDC is the first longitudinal bleeding disorders initiative to engage directly to the affected individuals and their family members. As the nation’s largest patient advocacy group for people with bleeding disorders, NHF believes the perspective of affected individuals and families must be included in research into better treatments and cures for bleeding disorders.

MyBDC will enable researchers to gain deeper insight into such topics as:

  • The effect of HTC care on the community
  • Opioid use and substance use disorder
  • The effectiveness of medical marijuana and other non-opioid treatments for pain 
  • Mental health issues
  • Family dynamics
  • What issues help and hinder adherence