Introducing NHF’s Community-Powered Registry, MyBDC

The National Hemophilia Foundation (NHF) has created a community-powered registry for people with bleeding disorders, MyBDC. MyBDC will help researchers understand what it means to live with a bleeding disorder from the perspective of the people who are affected, their siblings, partners, and caregivers. The goal of MyBDC is to improve quality of life (QOL), identify research questions important to community members, and add the communities voice to the conversation.

How MyBDC works:

Participants may opt out of any survey at any time. The information collected in MyBDC will always be reported in a de-identified and aggregate manner. NHF will never share MyBDC personal information with any third parties for marketing or any other purposes.

What MyBDC gives participants:

More information, including how to enroll, can be found on NHF’s MyBDC website.

For an in-depth discussion about MyBDC, check out Bloodstream Media’s Ask the Expert podcast, featuring NHF’s head of research, Michelle Witkop, DNP, FNP-BC  and Maria Santatella, MSN, RN-BC, CPHON  research nurse.

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