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Recruiting

NCT Number: NCT03327779

World Bleeding Disorders Registry

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.

Recruiting

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Key information

Conditions

Hemophilia A Blood Coagulation Disorders Blood Coagulation Disorders, Inherited Blood Platelet Disorders Coagulation Protein Disorders Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Genetic Diseases, X-Linked Hematologic Diseases Hemic and Lymphatic Diseases Hemophilia B Hemorrhagic Disorders Von Willebrand Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

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

Exclusion criteria

  • none

Treatment and study plan

Primary outcomes

  1. Number of participants recruited

    Time frame: 5 years

  2. Number of participating Hemophilia Treatment Centres

    Time frame: 5 years

  3. Number of participating countries

    Time frame: 5 years

Study contacts

Contact information is provided by the study sponsor or research team.

Donna Coffin, M.Sc.

CONTACT

[email protected]

+15148757944 ext. 2832

Emily Ayoub, Ph.D.

CONTACT

[email protected]

+15148757944 ext. 2864

Sponsors and collaborators

Lead sponsor

World Federation of Hemophilia

Other

Registry information

Acronym: WBDR

Important dates

Study start
2018
Primary completion
2028
Study completion
2028
First posted
Oct 31, 2017
Registry last updated
Aug 14, 2023

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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