World Bleeding Disorders Registry

NCT ID: NCT03327779

Last Updated: 2023-08-14

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

20000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2018-01-26

Study Completion Date

2028-01-31

Brief Summary

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The WBDR is an international observational disease registry of patients with hemophilia. It will provide a platform for a network of hemophilia treatment centres (HTCs) around the world to collect uniform and standardized patient data and guide clinical practice. With informed consent from the patient, the WBDR stores anonymous data about the person's disease, such as hemophilia type and severity, symptoms, and treatment.

Detailed Description

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The WBDR is a prospective, global registry of patients diagnosed with hemophilia A and B. Following the success of a pilot study, implementation of the full scale WBDR is underway. The goals are to enroll at least 200 HTCs from more than 50 countries, and at least 10,000 people with hemophilia, during the first five years, aiming for representation of patients from around the world and from all levels of access to care. Minimal criteria for participation of HTCs include access to reliable internet, human resources for data entry and commitment to long-term enrolment and follow-up of patients. The WBDR database is being developed through a collaboration between the WFH, Karolinska Institute and Health Solutions.

By combining data from countries around the world, the WBDR will provide a large amount of real world data, on which researchers can address important scientific and clinical issues. The World Bleeding Disorders Registry (WBDR) is intended to fill existing gaps in knowledge by collecting real world data on the patient clinical experience around the globe.

Conditions

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Hemophilia A Hemophilia B Von Willebrand Diseases

Study Design

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Observational Model Type

ECOLOGIC_OR_COMMUNITY

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* Patients of participating Hemophilia Treatment Centres with Hemophilia A or B, or von Willebrand Disease

Exclusion Criteria

* none
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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World Federation of Hemophilia

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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World Federation of Hemophilia

Montreal, Quebec, Canada

Site Status RECRUITING

Countries

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Canada

Central Contacts

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Donna Coffin, M.Sc.

Role: CONTACT

+15148757944 ext. 2832

Emily Ayoub, Ph.D.

Role: CONTACT

+15148757944 ext. 2864

Facility Contacts

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Donna Coffin, M.Sc.

Role: primary

+15148757944 ext. 2832

Emily Ayoub, Ph.D.

Role: backup

+15148757944 ext. 2864

Other Identifiers

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WBDR

Identifier Type: -

Identifier Source: org_study_id

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