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WORLD BLEEDING DISORDERS REGISTRY
FAQ

World Bleeding Disorders Registry

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.

PARTICIPATE IN THE WBDR

The WBDR is a key data collection tool improving the provision of care for people with bleeding disorders around the world.

Pathways to improving patient care with WBDR data

WBDR-improving-patient-care-sm-EN

HTCs interested in participating in the WBDR need to meet the following criteria:

  • Have access to the internet to connect to the web-based data entry system
  • Have an identified person who can input confidential patient data in the registry
  • Be willing to enrol patients in the registry over the long-term and complete follow up questionnaires at each patient visit

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.

Current program collaborations

  • Czech National Haemophilia Programme Registry (CNHPR): The CNHPR collects national data from eight pediatric and eight adult hemophilia treatment centres in the Czech Republic. As part of a proof-of-concept study, a de-identified minimal set of data from the 2018 CNHPR data were imported into the WBDR. Starting in 2019, and following the success of the first import, data on genetic testing, the Hemophilia Joint Health Score (HJHS), comorbidities, and hospitalizations were added to the imported dataset. Data from CNHPR continue to be annually updated in the WBDR.
  • Hereditary Bleeding Disorders Registry (HBDR) of the Thai Society of Hematology: In 2021, the HBDR of the Thai Society of Hematology (TSH) collaborated with the WBDR to integrate their 2020 and 2021 data in the global registry. As a result of the cooperative work between the HBDR of the TSH and the WBDR, the minimum and extended data sets of 300 people with hemophilia A and B have been transferred to the WBDR as part of the latest import. More detailed information of data transfer from the HBDR to the WBDR can be obtained here (in English only).

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.

WBDR DATA

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 WBDR 2023 Data Report includes data on 14,342 people with hemophilia and VWD from 119 hemophilia treatment centres (HTCs) and 44 countries. Please credit the WFH when WBDR data are used in presentations, publications, or other research materials.

Previous reports:

HTC SUPPORT

The WFH offers three WBDR programs to help HTCs collect quality data and conduct research studies using WBDR data.

WBDR Data Quality Accreditation Program

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.

WBDR Data Quality Levels
WBDR-data-quality-levels

WBDR Research Support Program (RSP)

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.

WBDR HTC Funding Program (HFP)

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.

WBDR Manuals and Login

For more information on data entry in the WBDR, participating HTCs are invited to consult the documents below.

myWBDR APP

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.

FAQ

If you have any questions, we invite you to check the WBDR FAQs or contact us at: [email protected]

CONTACT US

Please contact the WBDR team at [email protected].

WBDR Research Support Program

Supports HTCs to analyse and use their WBDR data

WBDR HTC Funding Program

Provides funding for data entry activities at participating HTCs

WBDR 2021 Data Report

Annual Report summarizing demographic and clinical data from participating countries

THANK YOU

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:

VISIONARY PARTNER
COLLABORATING PARTNERS

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Disclaimer

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.

Fraud Alert

Unauthorized solicitations – Warning

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.

Hemophilia Alliance

Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.

Israel - Tel Hashomer

Year of IHTC designation: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic surgery
  • Nursing
  • Physiotherapy
  • Dental care
  • Laboratory diagnosis (not genetics)
  • Psychology

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Physiotherapy

Singapore - Singapore

Year of IHTC designation: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis
  • Nursing
  • Dental care
  • Orthopedic care (no surgeries)
  • Physiotherapy
  • Psychology

Senegal - Dakar

Year of IHTC designation: 2016

Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy

Russia - Moscow and St. Petersburg

Year of IHTC designation: 2010

National Medical Research Center of Hematology of the Russian Academy of Medical Sciences

Areas of Specialty

  • Adult hematology
  • Nursing
  • Orthopedic surgery

Netherlands - Utrecht

Year of IHTC designation: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hematology
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic care and surgery
  • Laboratory diagnosis and Molecular genetics
  • Physiotherapy

Italy - Milan

Year of IHTC designation: 1972

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Blood banking
  • Orthopedic care and surgery
  • Physiotherapy
  • Diagnostic assessment of platelet functional defects

India - Mumbai

Year of IHTC designation: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Orthopedic care
  • Physiotherapy

India - Vellore

Year of IHTC designation: 2000

Christian Medical College, Vellore

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics with antenatal diagnosis
  • Nursing
  • Musculoskeletal management – physical and occupational therapy with physiatry
  • Orthopedic care and surgery
  • Blood banking
  • Dental care
  • Psychology/Social services
  • Antenatal diagnosis

Sweden - Malmö

Year of IHTC designation: 1976

Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and genetics
  • Nursing
  • Dental care and surgery
  • Orthopedic care and surgery
  • Blood banking (on request)

France - Paris

Year of IHTC designation: 1972

Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (KB) Hospitals)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Dental care
  • Orthopedic care and surgery
  • Psychology and Social services

Egypt - Cairo

Year of IHTC designation: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Molecular genetics
  • Blood banking
  • Physiotherapy

Canada - Toronto

Year of IHTC designation: 2018

University of Toronto Hemophilia Centres
St. Michael’s Hospital

Areas of Specialty

  • Adult hematology services
  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Brazil - Campinas, SP

Year of IHTC designation: 2008

Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and molecular genetics
  • Nursing
  • Dentistry
  • Physiotherapy

Belgium - Brussels

Year of IHTC designation: 2013

Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis
  • Orthopedic care and surgery

Belgium - Leuven

Year of IHTC designation: 1972

Hemofiliecentrum Leuven, University of Leuven

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis (not genetics)
  • Nursing
  • Psychology
  • Social services
  • Orthopedic care and surgery