Our research and data collection efforts are brought together under the WFH Research and Data Collection Program, which includes the Annual Global Survey, the World Bleeding Disorders Registry, the Gene Therapy Registry, and their accompanying education and capacity building programs. Our objective is to provide national member organizations (NMOs) and hemophilia treatment centres (HTCs) with the tools to increase their capacity, the framework to collect data on people with bleeding disorders, and the education and training to use that data to conduct research and advocate for better care.
The Annual Global Survey is a yearly cross-sectional survey of WFH national member organizations (NMOs) that includes country-level demographic and treatment-related data on people with hemophilia (PWH), von Willebrand disease (VWD), rare factor deficiencies, and inherited platelet disorders.
Data Collection for the Annual Global Survey 2021 has officially begun! We are now collecting data for 2021 Annual Global Survey. For any questions or comments regarding the 2021 Annual Global Survey, please email [email protected].
|Data submission deadline||May 31|
|Data and Demographics Committee preliminary review||July|
|Final validation of country data||July 30|
|Publication of the Report on the Annual Global Survey||November|
In the report on the Annual Global Survey 2020, there were a total of 120 data respondents who provided demographic and treatment information on PWH. This report illustrates that globally over time, there have been over 393,000 PWBD identified and reported. Furthermore, new tables have been added to show the number of patients being treated with FVIIIa and FEIBA, as well as products used to treat VWD. The WFH is appreciative of all the efforts our national member organizations (NMOs) made in gathering this important data.
Please credit the WFH when Annual Global Survey data are used in presentations, publications, or other research material. We encourage researchers to contact us when they use WFH Annual Global Survey data. Any questions or comments related to the survey can be addressed to [email protected].
In the report on the Annual Global Survey 2021, the data are broken down into two sections: one section includes historical global data that portrays the growth in patient identification and reporting over time and the other shows the data for this specific year. In 2021, a total of 118 national member organizations (NMOs) contributed to the report. This report illustrates that globally over time, there have been over 429,232 PWBD identified and reported. The WFH is appreciative of all the efforts our national member organizations (NMOs) made in gathering this important data.
Supplementary charts and graphs are available online to provide more information and further analysis on people with bleeding disorders. Please credit the WFH when Annual Global Survey data are used in presentations, publications, or other research material. We encourage researchers to contact us at [email protected] when they use WFH Annual Global Survey data. Any questions or comments related to the survey can be addressed to [email protected].
The WFH Annual Global Survey mini reports are advocacy tools that provide more in-depth perspective and context to Annual Global Survey data.
The WBDR is the only global registry collecting standardized clinical data on people with hemophilia (PWH) and people with 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 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.
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 Gene Therapy Registry (GTR) is a prospective, observational, and longitudinal registry designed to collect long-term data on people with hemophilia (PWH) who receive gene therapy.
Gene therapy is a new and evolving therapeutic modality for hemophilia. Clinical trials have established the efficacy of gene therapy in decreasing bleeding and use of hemostatic treatment for at least five to eight years post-infusion. However, many unresolved questions on the long-term safety, variability and durability of efficacy remain at the completion of initial clinical trial programs. Lifelong follow‐up of patients is crucial to monitor long-term safety and efficacy of gene therapy.
The primary objective of the GTR is to determine the long-term safety of factor VIII and factor IX gene therapies for PWH. Secondary objectives are to determine the long-term efficacy and the durability of factor VIII and factor IX gene therapies in PWH, and to assess long-term quality of life and burden of disease post gene-therapy infusion.
Data will be captured in the registry one of two ways:
If participation in the GTR is of interest to your HTC or to your country, please contact us at [email protected].
Data Quality Program
The WFH GTR will include a comprehensive data quality program, which will be applied to all WFH GTR data entered in the gene therapy registry. All data will be evaluated on the following data quality dimensions:
For more information on participating in the GTR, PWH and HTCs are invited to consult the documents below:
Publications prepared by the GTR Steering Committee are available here:
Did you know?
IEQAS improves and standardizes laboratory diagnosis by auditing the effectiveness of a laboratory’s internal quality assurance systems to determine competence levels.
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 does not collect personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. This policy is your guide to how we will handle information we learn about you from your visit to our website.
Throughout our website, we provide links to other servers which may contain information of interest to our readers. We take no responsibility for, and exercise no control over, the organizations, views, or accuracy of the information contained on other servers. When linking to the WFH, we request that you ensure that there are no associated connections for commercial purposes. Any official use of the name WFH or the use of its logo needs to be approved by the WFH. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request.”
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The WFH encourages the dissemination of its information and welcomes proposals on the reprinting, redistribution, and translation of its materials. If you would like to publish information that you find on our website, please send your request to [email protected].
If you have suggestions on how to make the site more accessible, please contact us at [email protected].
Our website provides users the opportunity to opt-out of receiving communications from us through a special online form or via the communication they have received. You may, at all times, choose to receive which communications within the organization you can receive or none at all. You may also update your contact information previously provided to us via another online form.
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.
Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
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
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital
Manchester Haemophilia Comprehensive Care Centre (Children’s and Adult’s)
Manchester Royal Infirmary and Manchester Children’s Hospital
Oxford Haemophilia Centre and Thrombosis Centre
Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital
National Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
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
Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)
Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)
International Hemophilia Training Center – Bangkok
University of North Carolina Hemophilia & Thrombosis Center
Nationwide Children’s Hospital