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World Bleeding Disorders Registry (WBDR)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT03327779
Recruitment Status : Not yet recruiting
First Posted : October 31, 2017
Last Update Posted : October 31, 2017
Information provided by (Responsible Party):
World Federation of Hemophilia

Brief Summary:
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.

Condition or disease
Hemophilia A Hemophilia B

Detailed Description:

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.

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Study Type : Observational [Patient Registry]
Estimated Enrollment : 10000 participants
Observational Model: Ecologic or Community
Time Perspective: Prospective
Target Follow-Up Duration: 5 Years
Official Title: World Bleeding Disorders Registry
Estimated Study Start Date : January 2018
Estimated Primary Completion Date : January 2023
Estimated Study Completion Date : January 2028

Resource links provided by the National Library of Medicine

Primary Outcome Measures :
  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 ]

Information from the National Library of Medicine

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Ages Eligible for Study:   Child, Adult, Older Adult
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Probability Sample
Study Population
Patients of participating Hemophilia Treatment Centres with Hemophilia A or B

Inclusion Criteria:

  • Patients of participating Hemophilia Treatment Centres with Hemophilia A or B

Exclusion Criteria:

  • none

Additional Information:

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Responsible Party: World Federation of Hemophilia Identifier: NCT03327779    
Other Study ID Numbers: WBDR
First Posted: October 31, 2017    Key Record Dates
Last Update Posted: October 31, 2017
Last Verified: October 2017
Additional relevant MeSH terms:
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Hemostatic Disorders
Hemophilia A
Hemophilia B
Blood Coagulation Disorders
Blood Coagulation Disorders, Inherited
Hematologic Diseases
Coagulation Protein Disorders
Hemorrhagic Disorders
Genetic Diseases, Inborn
Genetic Diseases, X-Linked
Vascular Diseases
Cardiovascular Diseases