Brief Title
World Bleeding Disorders Registry
Official Title
World Bleeding Disorders Registry
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.
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.
Study Type
Observational [Patient Registry]
Primary Outcome
Number of participants recruited
Condition
Hemophilia A
Publications
* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.
Recruitment Information
Estimated Enrollment
10000
Start Date
January 26, 2018
Completion Date
January 2028
Primary Completion Date
January 2023
Eligibility Criteria
Inclusion Criteria: - Patients of participating Hemophilia Treatment Centres with Hemophilia A or B Exclusion Criteria: - none
Gender
All
Ages
N/A - N/A
Accepts Healthy Volunteers
No
Contacts
, +15148757944, [email protected]
Location Countries
Canada
Location Countries
Canada
Administrative Informations
NCT ID
NCT03327779
Organization ID
WBDR
Responsible Party
Sponsor
Study Sponsor
World Federation of Hemophilia
Study Sponsor
, ,
Verification Date
July 2020