Welcome to The Research Corner
On this page, you will find pertinent information and external links to research opportunities designed to enhance outcomes for patients and families in the bleeding disorders community. As a federally recognized Hemophilia Treatment Center, we work closely with organizations such as the American Thrombosis and Hemostasis Network, as well as government entities like the CDC, to help researchers gather crucial data with the potential to improve overall health and treatment outcomes for members of the bleeding disorders and rare disease community.
If you have any questions, please submit them here or call the center at (920) 965-0606 and ask to speak with our Research Coordinator, John Mazzariello, LPN.
The American Thrombosis and Hemostasis Network (ATHN)
The American Thrombosis and Hemostasis Network (ATHN) is a nonprofit organization dedicated to improving the lives of people affected by bleeding and clotting disorders. They are using technology to secure data, advance knowledge, transform care—and ultimately improve lives. So far, the results have been impressive. ATHN is involved in several national projects and works closely with federally recognized HTCs to achieve their goals. You can find out more about ATHN on their website.
ATHNdataset Registry
One of the easiest ways to get involved with ATHN and help the bleeding disorder community is through involvement in the ATHNdataset Registry. Many of our patients have consented to this study in the past, but due to recent updates we will be reconsenting patients through the next couple of years. Our Research Coordinator can give you all the details at your next comprehensive annual visit.
The ATHNdataset registry is the largest blood disorders, real-world dataset in the United States. This study has no physical component and is not a clinical trial. It is simply a way to share your medical information with researchers and scientists in a deidentified fashion, meaning your personal information is never at risk. Participating in the ATHNdataset is easy, confidential, and secure for patients. There are no costs and no special tests involved.
Community Voices in Research
Community Voices in Research is a patient-driven research registry sponsored by the National Bleeding Disorders Foundation. It allows individuals and families affected by bleeding disorders to share their experiences and perspectives to help guide future research priorities. Participation is voluntary and can be completed directly by patients online.
vWD Connect Registry
The vWD Connect Registry is designed specifically for individuals with severe von Willebrand disease. This registry gives patients the opportunity to contribute information about their health and lived experiences to support a better understanding of vWD and improve care over time. Patients can enroll independently and choose how their information is used for research purposes.
ClinicalTrials.gov
While we do not perform clinical trials at the Hemophilia Outreach Center, we are happy to help you find and participate in ones that are of interest to you. This link can help you find other research projects and clinical trials that are recently completed as well as currently recruiting. Please reach out if you have any questions.