What's in it for Me?
By participating in MyBDC, you will help improve the future of people living with inherited bleeding disorders and their immediate family members. You will also benefit directly by using the information and tools offered by MyBDC to take control of your health. These include:
- MyBDC Personalized Dashboard: You can access your personal information and the aggregate, de-identified information of others through your Personalized Dashboard which is populated by survey responses. This information allows you to:
- follow trends and compare changes over time -such as pain level and quality of life.
- compare your information to the de-identified and aggregated BDC participants. This way, you’ll know how common or unusual your experiences are.
- make informed decisions about your healthcare
- CareLinks: Through MyBDC you can create a link to share any information available in your MyBDC Personalized Dashboard with trusted individuals (such as grandparents, babysitters, daycare operators, school nurses/personnel, other healthcare providers such as dentists, etc.). You decide what information to share and for how long; it could be personal health information or simply education on your specific bleeding disorder. If you update your information in your MyBDC account, it will automatically be updated in any CareLink you have created.
- Track your medications history: MyBDC can help you keep track of your medication history and how it relates to your everyday health. For example, you can track your infusions and see how they relate to your reported pain and overall quality of life.
- Shared decision-making: the information included in MyBDC can be printed and shared with any healthcare professional such as your hematologist, nurse or emergency room staff. This report would provide a comprehensive view of your individual medical condition encouraging shared decision making when evaluating treatment options.
- Resources: MyBDC will direct you to trusted, up-to-date, relevant and evidenced-based information about bleeding disorders and health -including any important findings we discover analyzing the information. MyBDC will also help connect you to research opportunities and any local or national events that are taking place.
As with everything in MyBDC, taking advantage of these benefits is optional.