PrintFriendly

Print Friendly, PDF & Email

Frequently Asked Questions

MyBDC FAQs

1. What is MyBDC?

2. What is the goal of MyBDC?

3. Who can participate in MyBDC?

4. How can I join MyBDC?

5. How will MyBDC's data be gathered?

6. How will my information in MyBDC's be protected?

7. How will MyBDC benefit me as a participant?

8. How will MyBDC benefit others within the bleeding disorders community?

9. Why should YOU participate?

 

1. What is MyBDC?

A new partnership between the bleeding disorder community and NHF! MyBDC is a community powered registry that will document the experiences of persons living with inherited bleeding disorders and their non-affected relatives over the years to offer a 360-view of what it is like to live with a bleeding disorder.

2. What is the goal of MyBDC?

MyBDC will provide an important piece that is currently missing; the community’s voice and experiences to complement and enhance the value of the current data sets overall. The ultimate goal is to improve quality of life (QOL), identify research questions important to the community, and together contribute to finding a cure.

3. Who can participate in MyBDC?

MyBDC will be open to all persons affected by inherited bleeding disorders as well as non-affected family members (parents, spouses, grand-parents, siblings, and children).

4. How can I join MyBDC?

You can enroll now! Enroll by visiting MyBDC.hemophilia.org from any device (smartphone, computer, iPad, etc.).

5. How will MyBDC's data be gathered?

Participants complete a short enrollment survey. Once enrolled, they will receive a baseline survey followed by annual surveys which will ask the same information (longitudinally). These annual surveys (called Core Surveys) will look for patterns/trends/changes over time. Additional shorter surveys focused on specific areas of interest will be sent periodically. Participation will always be optional.

6. How will my information in MyBDC's be protected?

MyBDC will not share your name, address, and other personal information with anyone else. All information reported will be de-identified (meaning your personal information will be removed) and aggregated (meaning all information is grouped and no individual information is reported by itself). MyBDC is voluntary. You always have the option of opting out of any survey.

How will MyBDC benefit me as a participant?

  • Personalized dashboard—access to personal profile and survey responses allows you to:
    • Follow trends, compare changes over time, and make informed decisions about your health care
    • Compare your information with the deidentified/aggregate information of others in MyBDC.
  • Education that is up-to-date and relevant; additional resources and research opportunities
  • CareLinks allow you to share selected information with anyone of your choosing for any length of time (school/daycare/healthcare provider)
  • Personal MyBDC record available to print and share your profile with any healthcare provider

7. How will MyBDC benefit others within the bleeding disorders community?

  • Focused education—NHF’s education programs will use MyBDC to create materials based on patient-reported data
  • Informed advocacy— Gather evidence that will help NHF and its Chapters in State and National advocacy efforts that defends affordable access to specialized centers and treatment
  • Efficient research— A nimble platform that facilitates implementation of research
  • Rapid research cycles—The ability to answer new questions quickly
    • Help researchers identify priority research topics important to the community
    • Rapid data collection
  • Aligned data sets—Complimenting other existing clinical research efforts
    • Provide the community’s voice not currently available anywhere else, giving researchers access to additional relevant and very important information

8. Why should YOU participate?

  • To add your voice and experiences that will impact the future
  • So that you can direct decisions that will impact the future
  • To help researchers find answers that will impact the future, and eventually contribute to finding a cure
  • Because your voice matters!

 

Still have Questions?
Contact: Michelle Witkop, DNP, FNP-BC, Head of Research
Email: mwitkop@hemophilia.org