There are many reasons why joining in a clinical trial may not be right for you. Maybe you are not eligible for currently available trials, or maybe right now life is just too busy to make time for all the requirements of a trial.

That’s okay! Because there are many ways to get involved in research that don’t require participating in a clinical trial. You can still be a part of research.

Following are a few ways to get involved. You can also connect with your HTC or community resources like the National Bleeding Disorders Foundation to find out ways you can support research for your bleeding disorder.

Join Community Voices in Research (CVR)

The National Hemophilia Foundation has set up a community network online called CVR. It’s designed to help researchers understand what it really means to live with a bleeding disorder and the effect of current treatments, therapies, and policies. CVR collects information from people with bleeding disorders as well as their parents, siblings, partners, and caregivers. All of this information helps inform how researchers think about improving care for bleeding disorders, including understanding what’s most important to you in new treatments, ways they can improve your quality of life, and how treatment experiences affect your entire family.

What can you expect if you join CVR?

Participating in CVR is an easy way to get involved in research that provides very important information to the research community. By joining, you’ll share your voice through simple, online surveys consistently over several years. This allows researchers to better understand how bleeding disorders affect you and your family members over longer periods of time. And, with a dashboard customized to your responses, it also can help you have a better understanding of how a bleeding disorder is affecting your own life. Information collected in CVR is confidential. Involvement in CVR does require some commitment to take part in new surveys, but you can complete these surveys at any time. For more information on CVR or to join, click here!

 

Another Network to Consider: ATHN and CDC Community Counts

Community Counts is led by the CDC in partnership with ATHN and the US HTC Network.

The Community Counts project is gathering data to learn more about patients with bleeding and clotting disorders at hemophilia treatment centers (HTCs) nationwide. The goal is to increase knowledge of inhibitors and other complications, reduce and prevent them from happening, and improve the quality of life of people with bleeding disorders.

Your voice is welcome to inform this important data gathering. For more information on Community Counts, click here!

 

Join a Virtual Advisory Panel

One simple way to participate in research is to join a virtual advisory panel.

These calls are scheduled by the National Hemophilia Foundation, other community organizations, or industry partners to connect directly with people with bleeding disorders and their families. These calls provide a useful opportunity to get involved in designing clinical trials and providing your unique perspectives in research programs. Each call is to talk about a specific topic related to your bleeding disorder, and the sponsor will prepare a series of questions that you will discuss with others who join. The discussion is recorded to help inform research questions and plans for new medicines, but your personal information is not shared.

Involvement in a virtual advisory panel is simple and requires only your time for the call. Contact [email protected].

 

Consider a Remote Study or Survey

Your HTC or local NHF chapter might periodically send information about research questions, surveys or studies that are not related to new treatments. Consider responding to these surveys to share information about your experience or the experiences of your loved one. This information is very useful to inform ongoing research topics or new opportunities, so keep an eye on your email!

 

Stay Informed

One important way that we can encourage more progress in research is just making sure more people know about it and are excited about it. So take the opportunity to stay informed about what’s happening in our community. Webinars, podcasts and updates from community organizations are great ways to hear the latest in research. Be sure to actively participate and ask questions of the presenters. And, if you hear about something that you think might be useful for you, share that information with your care team.

Just as important is making sure your voice is part of these activities. If you DON’T see resources, sessions and information about your bleeding disorder or topics of interest to you, please connect with your local community organizations or with NHF and other national groups. Request more information about research on topics that matter to you and ask about materials and educational content that is easy to understand, which can help you and many others like you make more informed choices about your care.

Finally, consider supporting research by donating to NHF efforts. Click here for more details.

 

Learn More: Additional Resources