CVR is open to all people affected by inherited bleeding disorders as well as their immediate family members (parents, spouses, children, siblings, and grandparents).
CVR will help researchers understand what it means to live with a bleeding disorder from the community member’s perspective with the ultimate goal to improve quality of life (QOL) and identify research questions important to the community.
By adding your voice and experiences, you can help shape the future of research!
How Does It Work?
Participation in CVR 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 NBDF 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.
- Research Surveys: CVR participants receive direct opportunities to participate in patient-reported outcome research. NBDF will always explain who the sponsor is and if there is compensation to participate in them - the choice to participate is always yours. The responses will always be shared and reported in a de-identified aggregate manner.
What's In It For Me?
By participating in CVR, 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 CVR to take control of your health. These include:
- CVR 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 CVR participants. This way, you’ll know how common or unusual your experiences are.
- make informed decisions about your healthcare
- CVR Record: Through CVR you can print your personal CVR Record and share it 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; it could be personal health information or simply education on your specific bleeding disorder. If you update your information in your CVR account, it will automatically be updated in any CVR Record you have created.
- Track your medications history: CVR 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 CVR 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: CVR 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. CVR will also help connect you to research opportunities and any local or national events that are taking place.
- Virtual Advisory Panels: As a CVR participant you will receive compensated opportunities to share your opinions with clinical trial sponsors or investigators on specific topics related to study design or educational projects. You don’t like how many visits are required to participate in a clinical trial? You can tell them! You don’t have to participate in a clinical trial to help them design it!
As with everything in CVR, taking advantage of these benefits is optional.