How Does It Work?
Participation in MyBDC occurs mostly through online surveys. All surveys are anonymous and voluntary. You may opt out at any time.
The survey schedule is as follows:
- Enrollment Survey: usually takes 2-3 minutes and involves answering a few questions about yourself (such as name, email address, date of birth, gender, race/ethnicity, zip code, diagnosis and severity).
- Baseline Survey: asks questions about your experience living with a bleeding disorder. Examples of these questions include: types of symptoms and severity, prescribed treatment, type of insurance coverage, education level, marital status, etc. For most people, this will be the longest survey. Based on your history, gender, and disorder, it may take up to 30 minutes to complete.
- Core Survey: is sent out once a year and consists of core questions which will be similar year after year. Asking similar questions year after year will allow NHF and you to follow trends and identify patterns and changes over time. It asks about bleeding symptoms, joint health, medication regimen, pain level, activity level, etc. This survey should take about 15-20 minutes to complete.
- Sub-surveys: are shorter and focused on areas of interest—for example, target joints, pain, women’s issues, etc. These surveys should only take 5-10 minutes to complete.
- Hot Topic Questions: are sent periodically. These are single questions on a specific topic such as: “Are you in pain today?” or “Have you had a bleed in the past week?” If answered yes, we will offer you the opportunity to complete 4 or 5 additional questions about the topic.