International registry for patients with hemophilia and bleeding disorders
World Bleeding Disorders Registry
This study is collecting information from patients with hemophilia and bleeding disorders around the world to help improve treatment and understanding of these conditions.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 20000 (estimated) |
| Sex | All |
| Sponsor | World Federation of Hemophilia Academic / other |
| Locations | 1 site (Montreal, Quebec) |
| Trial ID | NCT03327779 on ClinicalTrials.gov |
What this trial studies
The World Bleeding Disorders Registry (WBDR) is an international observational registry aimed at collecting standardized data from patients diagnosed with hemophilia A, hemophilia B, and von Willebrand Disease. It seeks to enroll over 10,000 patients from at least 200 hemophilia treatment centers across more than 50 countries. The registry will gather information on disease type, severity, symptoms, and treatment, with the goal of improving clinical practice and addressing scientific questions through real-world data. Participation requires informed consent and commitment from treatment centers to long-term patient follow-up.
Who should consider this trial
Good fit: Ideal candidates include patients with hemophilia A, hemophilia B, or von Willebrand Disease who are treated at participating hemophilia treatment centers.
Not a fit: Patients who do not have hemophilia or von Willebrand Disease will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of hemophilia and improve treatment strategies for patients worldwide.
How similar studies have performed: Other observational registries have successfully gathered valuable data on hemophilia, indicating that this approach has potential for success.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients of participating Hemophilia Treatment Centres with Hemophilia A or B, or von Willebrand Disease Exclusion Criteria: * none
Where this trial is running
Montreal, Quebec
- World Federation of Hemophilia — Montreal, Quebec, Canada (Recruiting)
Study contacts
- Study coordinator: Donna Coffin, M.Sc.
- Email: dcoffin@wfh.org
- Phone: +15148757944
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.