Clinical Trial Awareness: 5 Ongoing Clinical Trials Advancing Care for Bleeding Disorders
Bleeding disorders are a group of conditions that affect the body’s ability to form blood clots properly. Normally, when a person is injured, platelets and clotting proteins work together to stop bleeding. Some bleeding disorders are inherited and passed down through families, while others may develop later in life. In the United States alone, at least 33,000 people are living with Hemophilia, while Von Willebrand Disease, the most common type, affects about 1 in 100 people, although many cases remain undiagnosed. Bleeding Disorders Awareness Month, observed each March, helps raise awareness about these conditions and highlights the importance of early diagnosis, education, and continued research.
Clinical research plays an important role in improving care for people living with bleeding disorders. However, identifying relevant clinical trials can sometimes be challenging. TrialX helps make this process easier by connecting individuals with clinical studies they may be eligible for based on their condition and location.
In this blog, we highlight five clinical trials currently recruiting participants that are focused on advancing research and care for bleeding disorders.
1. Early Genomic Testing for Inherited Bleeding Disorders
Sponsor: Queen’s University
What It’s Testing and Why It Matters
Many people with ongoing bleeding symptoms go through multiple blood tests but still never receive a clear diagnosis. In fact, researchers estimate that up to half of patients evaluated for bleeding disorders are eventually labeled as having a “bleeding disorder of unknown cause.”
This study is testing whether introducing genomic (DNA) testing earlier in the diagnostic process can help identify the underlying cause sooner. Participants will either receive standard diagnostic testing alone or standard testing combined with early genomic testing that analyzes more than 300 genes linked to bleeding and clotting disorders..
Why It Stands Out
Traditional diagnostic testing looks at how blood clots or how specific proteins behave. Genomic testing takes a different approach—it looks directly at a person’s genetic blueprint to identify mutations that may be causing abnormal bleeding. By comparing these two diagnostic pathways, researchers want to see whether genetic testing can shorten the diagnostic journey and uncover causes that standard tests might miss.
What It Could Mean for Patients
If this approach proves effective, it could:
- Help more patients receive a clear diagnosis sooner
- Reduce the uncertainty often experienced during long diagnostic processes
- Support more targeted treatment and symptom management
Locations
This study is recruiting participants in Canada, including sites in Kingston and Ottawa, Ontario, with an additional site planned in Toronto.
Learn more about the study and check your eligibility here.
2. Heavy Menstrual Bleeding Progestin Treatment in Bleeding Disorders Study
Sponsor: Oregon Health & Science University
What It’s Testing and Why It Matters
This study is examining how two commonly used hormonal treatments help manage heavy menstrual bleeding in adolescents and young adults with inherited bleeding disorders. Heavy menstrual bleeding can significantly affect daily activities, iron levels, and overall quality of life. In this study, participants who choose treatment with either a levonorgestrel intrauterine device (LNG-IUD) or oral norethindrone acetate (NETA) are followed for six months. Researchers will evaluate how well each treatment reduces bleeding, improves quality of life, and helps restore iron levels.
Why It Stands Out
Heavy menstrual bleeding is common among young people with bleeding disorders, but many treatments used in clinical care have not been extensively studied in this specific population. This multicenter study will enroll about 300 participants aged 10–24 across specialized hematology-gynecology clinics in the United States. It also compares outcomes in individuals with bleeding disorders to those without, helping researchers better understand how these treatments work across different groups.
What It Could Mean for Patients
If successful, this study could:
- Provide clearer guidance on treatment options for heavy menstrual bleeding
- Help clinicians understand how hormonal treatments affect bleeding symptoms and iron levels
- Support better treatment counseling and care planning for adolescents and young adults with bleeding disorders
Locations
This study is recruiting at several clinical sites across the United States, including Oregon Health & Science University in Portland, with additional sites planned in California, Colorado, Georgia, Michigan, Missouri, Pennsylvania, and Washington.
Learn more about the study and check your eligibility here.
3. Tracking the Long-Term Journey of People With Bleeding Disorders (ATHN Transcends)
Sponsor: American Thrombosis and Hemostasis Network (ATHN)
What It’s Testing and Why It Matters
This long-term study is collecting real-world information about people living with blood and bleeding disorders, including conditions such as hemophilia, von Willebrand disease, platelet disorders, and rare bleeding conditions. Rather than testing a new treatment, the study follows participants over time to understand how different therapies work in everyday clinical care. Researchers will track health outcomes, treatment patterns, bleeding events, and safety data to build a clearer picture of how these conditions are managed over many years.
Why It Stands Out
This is one of the largest observational studies of bleeding and blood disorders, with a goal of enrolling about 3,000 participants across more than 150 specialized treatment centers. Participants may be followed for up to 15 years, allowing researchers to study long-term safety and effectiveness of therapies, including newer treatments and gene therapies that have recently become available.
What It Could Mean for Patients
Findings from this study could:
- Improve understanding of long-term outcomes for bleeding disorder treatments
- Help doctors compare how therapies perform in real-world settings
- Support the development of future treatment guidelines and research
Locations
This study is recruiting at many hemophilia and bleeding disorder treatment centers across the United States, including sites in California, Texas, New York, Florida, and several other states.
Learn more about the study and check your eligibility here.
4. World Bleeding Disorders Registry (WBDR)
Sponsor: World Federation of Hemophilia
What It’s Testing and Why It Matters
The World Bleeding Disorders Registry is a large international study collecting real-world data from people diagnosed with hemophilia A, hemophilia B, and von Willebrand disease. The registry gathers standardized clinical information from patients treated at hemophilia treatment centers worldwide.
With patient consent, participating centers record anonymous data such as disease type, severity, symptoms, and treatment history. The goal is to build a global dataset that helps researchers better understand how bleeding disorders are diagnosed and managed across different healthcare systems.
Why It Stands Out
Reliable global data on bleeding disorders is still limited, especially from regions with fewer resources. By combining information from many countries, the registry helps researchers study:
- Differences in access to care and treatment
- Patterns in disease severity and symptoms
- How treatment approaches vary across regions
The registry aims to enroll at least 10,000 people with hemophilia from more than 50 countries, working with over 200 hemophilia treatment centers.
What It Could Mean for Patients
Data from this registry could:
- Improve understanding of how bleeding disorders are treated worldwide
- Support research on long-term outcomes and disease patterns
- Help guide future clinical research and care practices
Locations
The registry is coordinated by the World Federation of Hemophilia in Montreal, Canada, with participation from hemophilia treatment centers around the world.
Learn more about the study and check your eligibility here.
5. Impact of IV Iron on Bleeding Symptoms in Iron-Deficient Patients With Inherited Bleeding Disorders (IRON-BD)
Sponsor: University of Pittsburgh
What It’s Testing and Why It Matters
This study is exploring how intravenous (IV) iron treatment may affect bleeding symptoms in people with inherited bleeding disorders who also have iron deficiency. Iron deficiency is common in individuals who experience frequent bleeding and can contribute to fatigue, anemia, and other health concerns. In this study, participants receive standard IV iron therapy, and researchers evaluate changes in bleeding symptoms, iron levels, and quality of life before and after treatment.
Why It Stands Out
Researchers are examining a question that has not been widely studied: how iron deficiency may influence platelet function and bleeding severity in people with inherited bleeding disorders. The study includes detailed assessments such as bleeding scores, laboratory tests, and quality-of-life questionnaires over a three-month follow-up period to better understand how restoring iron levels may impact symptoms.
What It Could Mean for Patients
Findings from this study could:
- Improve understanding of the relationship between iron levels and bleeding symptoms
- Help guide treatment strategies for patients with iron deficiency and bleeding disorders
- Support more personalized care to improve energy levels, daily functioning, and overall well-being
Locations
This study is recruiting at the Hemophilia Center of Western Pennsylvania in Pittsburgh, Pennsylvania, United States.
Learn more about the study and check your eligibility here.
Advancing Care Through Clinical Research
Clinical research helps improve how bleeding disorders are diagnosed, understood, and treated. Ongoing research continues to expand knowledge about these conditions and supports the development of better care and treatment options over time.
If you’re interested in learning about clinical trials, you can explore currently recruiting studies at TrialX.com or sign up for our volunteer registry to receive notifications about trials that may be relevant to you.
For more information, resources, and support, you can also visit the World Federation of Hemophilia, National Bleeding Disorders Foundation, and Hemophilia Federation of America.
