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.
Current Articles of Interest
Current Articles of Interest shares recent articles, studies, and clinical trials that may be meaningful to people and families affected by bleeding disorders. This section is meant to help you stay informed about new research, potential treatment advances, and topics being explored by researchers today. These resources are provided for awareness and conversation, and we encourage you to discuss any questions or interest with your care team.
Welcome to the ATHN CV
The ATHN CV is a centralized resource where you can explore ATHN peer-reviewed publications and research contributions. It brings together the work of ATHN and its partners in one place, making it easier to access insights, track progress, and see how research is helping shape the future of care for bleeding and clotting disorders.
Expert Review of Hematology, Volume 19, Issue sup1 (2026)
We are thrilled to share some exciting news: the National Research Blueprint (NRB) papers have officially been published!!! This is a major milestone for NBDF and a significant achievement for our community. The five papers have been published as a special collection, Bleeding Disorders Research: From Blueprint to Collaborative.
This achievement reflects years of dedication from hundreds of NBDF staff, volunteers, working group members, researchers, healthcare professionals, partner organizations, industry partners, community leaders, and importantly, Lived Experience Experts (LEEs). Together, we created a roadmap for transforming how research is prioritized, designed, conducted, and translated into meaningful impact. Thank you all for your support and for helping turn a bold idea into a movement.
What began with NBDF’s 2021 State of the Science Summit, evolved through the development of the National Research Blueprint (2020-2024), and is now being implemented through the Bleeding Disorders Research Collaborative (BDRC) has culminated in a published body of work that will help shape the future of bleeding disorders research, and beyond. The publications describe a research collaborative that places LEEs at the center and is grounded in health equity, diversity, inclusion, and belonging, ensuring that research priorities reflect the needs of the entire community.
Importantly, this work is already moving from vision to action. The BDRC has already sparked new initiatives, including the NBDF Research Roundtable, which brought together LEEs, researchers, clinicians, and industry partners to identify strategies for increasing the inclusion of females in clinical research. Building on this momentum, NBDF also plans to advance this work focused on the development of female-specific outcomes that reflect what matters most this ignored population and also the Research Ambassador Program which will give LEEs the tools needed to participate in research beyond being human subjects. Together, these efforts demonstrate that the NRB is not simply a set of recommendations, but a catalyst for meaningful change across research, care, and patient outcomes.
While publication marks the conclusion of one chapter, it is also a reminder of how much work remains ahead. The BDRC is not simply a set of recommendations. It is a call to action and a catalyst for collaboration, innovation, and discovery. Most importantly, it demonstrates what is possible when LEEs, researchers, healthcare professionals, industry partners, and advocates unite around a shared vision. Together, we are building a future where research is driven by community priorities, grounded in health equity, and focused on improving the lives of all people living with bleeding disorders.
Today, we celebrate!
With gratitude and pride,
Maria Santaella