The WBDR is the only global registry collecting standardized clinical data on people with hemophilia (PWH) and people with von Willebrand disease (VWD). The WBDR provides a web-based data entry platform to a large network of participating hemophilia treatment centres (HTCs) to collect and manage their data.
For the past five years, the WBDR has been collecting data on PWH. In early 2023, the WFH launched the WBDR VWD module, making it the first global registry to collect data on VWD diagnosis and management, and on the health outcomes of people living with VWD. WBDR data are invaluable for evidence-based advocacy, research, and improving clinical practice.
The WBDR is a key data collection tool improving the provision of care for people with bleeding disorders around the world.
HTCs interested in participating in the WBDR need to meet the following criteria:
If your HTC is interested in participating in the WBDR, please email us at [email protected]. The WFH will guide you through the process of obtaining ethics approval from your local institution or ministry of health.
Once HTCs have obtained ethics approval, the individual(s) who will be doing data entry must take a WBDR data entry training before they can start enrolling patients.
The International Data Integration Program helps to combine resources from existing bleeding disorders registries and maximize the utility of data that currently exist by facilitating data transfer from existing patient registries to the WBDR. The program is available to interested countries who wish to join this global initiative by sharing their national data and having their data represented in the WBDR. Contact the WFH at [email protected] for more information.
Participating in the WBDR allows people with bleeding disorders (PWBDs) to play an active role in building this important resource and improving the future of global bleeding disorders care. If you are a PWBD, or a caregiver, and are interested in enrolling in the WBDR, please contact your HTC and inquire about their participation in the WBDR.
The WBDR database features hemophilia and VWD data sets covering demographics, diagnostics, and clinical areas.
The WBDR was launched in 2018 with the hemophilia data set. In early 2023, the VWD data set was added and the WBDR started enrolling people with VWD. The registry includes five functional scales and a quality of life scale.
All patient information stored in the WBDR is de-identified and confidential. The data policy guidelines of Health Solutions adhere to both the CE-mark (Conformité Européenne) and the U.K. IGSoC (Information Governance Statement of Compliance) standards, and are compliant with the General Data Protection Regulation (GDPR).
The WFH offers three WBDR programs to help HTCs collect quality data and conduct research studies using WBDR data.
The WBDR offers a comprehensive Data Quality Accreditation (DQA) Program. The Program includes a robust data cleaning and validation process that is used to enhance the data completeness, accuracy, and consistency. The WBDR data quality team works with all HTCs, providing training and feedback on the quality of collected data.
The WBDR Research Support Program (RSP) is designed to motivate and support WBDR HTCs to collect, analyze, and use their WBDR data. The goal is to encourage countries with limited data collection experience to participate in the WBDR and use their data for research and advocacy.
The WBDR HTC Funding Program (HFP) is designed to provide funds to support data collection activities at WBDR HTCs in low and lower-middle income countries. The Program aims to help HTCs improve patient enrolment and improve the quality and completeness of entered data.
For more information on data entry in the WBDR, participating HTCs are invited to consult the documents below.
myWBDR is a mobile application designed for individuals diagnosed with hemophilia and/or von Willebrand disease (VWD) who are enrolled in the World Bleeding Disorders Registry (WBDR). It empowers patients by offering them a user-friendly platform to effortlessly track and monitor bleeding episodes, pain levels, treatments, and overall health status using EQ-5D-5L and PROBE questionnaires.
Supports HTCs to analyse and use their WBDR data
Provides funding for data entry activities at participating HTCs
Annual Report summarizing demographic and clinical data from participating countries
To each person with a bleeding disorder who has kindly agreed to share their data: thank you for helping improve the quality of care for people with bleeding disorders (PWBDs) around the world.
To each of the WBDR HTCs: thank you to all of the dedicated staff at participating HTCs who work hard to ensure that their data is meeting WBDR data quality standards.
The WFH thanks all of our sponsors for their generous financial support which allows us to continue to develop this important initiative. The WBDR is supported by funding from:
The WFH supports and empowers patient leaders and healthcare professionals worldwide by offering national, regional, and global training programs and initiatives.
Keep up to date on the latest developments in the bleeding disorders community, from medical advances to important events.
The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.
While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.
Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.
References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.
The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.
If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).
We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
Hospital Universitario La Paz
Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital
Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital
Singapore General Hospital Haemophilia Treatment Clinic
Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)
National Medical Research Center of Hematology of the Russian Academy of Medical Sciences
University Medical Centre Utrecht
Nara Hemophilia Centre
Nara Medical University
Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
National Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
International Hemophilia Training Center – Bangkok
Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (KB) Hospitals)
Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University
University of Toronto Hemophilia Centres
St. Michael’s Hospital
Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas
Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc
Hemofiliecentrum Leuven, University of Leuven
Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology
Ronald Sawers Haemophilia Centre