World Bleeding Disorders Registry

The WBDR is a web-based data entry system that provides a platform for a network of hemophilia treatment centres (HTCs) around the world to collect uniform and standardized patient data, and to guide clinical practice.

Implementation of the WBDR began with a global roll out in countries around the world in 2018, with a five-year goal of enrolling 0 people with hemophilia, from 0 HTCs representing 0 countries.

For participating HTCs, you can log-in here.


WBDR 2020 Data Report

The WBDR 2020 Data Report includes demographic and clinical data on more than 7,000 patients from 86 HTCs and 33 countries.

Please credit the WFH when WBDR data are used in presentations, publications or other research materials.

 

The WBDR 2019 Data Report includes demographic and clinical data on more than 4,000 patients from 53 HTCs and 29 countries.

Please credit the WFH when WBDR data are used in presentations, publications or other research materials.

 


The first WBDR Data Report was published in May 2019, and includes data entered into the WBDR in 2018. The WBDR 2018 Data Report includes data on more than 1,000 patients from 29 HTCs and 19 countries. WBDR Data reports will be published annually.

Please credit the WFH when WBDR data are used in presentations, publications or other research materials.

 

How to participate in the WBDR - HTCs

HTCs interested in participating in the WBDR should meet the following criteria:

  • Have access to internet to connect with 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 to request the application procedure at [email protected]. The WFH will guide HTCs through the process of obtaining ethics approval from their local institution or ministry of health, including providing HTCs with all necessary documentation.

Once HTCs have obtained ethics approval from their institution, they can start enrolling patients into the WBDR and entering patient data. The WFH provides training on patient recruitment, obtaining informed consent, entering data in the WBDR database, ensuring high quality data and other topics as needed.

If participation in the WBDR is of interest to your HTC or to your country, please contact the WFH at [email protected].

Registries, with international collaboration between countries, are the best way to pool sufficient data to increase the knowledge and evidence in rare disorders across different regions and economies. In an effort to combine resources from existing hemophilia registries and maximize the utility of data that currently exist, the WBDR data collection includes an international data integration component with the aim of 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 PWH represented in the WBDR. More detailed information can be found here. Interested individuals are encouraged to contact the WFH at [email protected].

CURRENT PROGRAM COLLABORATIONS

  1. 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.
  2. 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 PWH 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).

 

The WBDR database is being developed through a collaboration between the WFH, the Karolinska Institute, and Health Solutions, the latter two organizations based in Sweden. All patient information that is 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 which was enforced in the European Union as of May 25th, 2018.

Please see the WBDR Data Privacy & Security document for more full details.

French
Spanish

The WBDR opened in 2018 with a minimal data set, and the extended data set was added to the database in March 2019. For details on the WBDR data fields, please see the Data Sets, linked below. The 5 functional scales and the quality of life scale, which are part of the extended data set, can be found below.

For more information on data entry guidelines, please see the quick reference guide and the WBDR user manual below.

WBDR Data Quality Accreditation Program

The WBDR includes a comprehensive WBDR Data Quality Accreditation (DQA) Program. The WBDR DQA Program includes a robust data cleaning and validation process used to enhance the data completeness, accuracy and consistency on all data (100% data fields, 100% patients) as follows:

  • Completeness – all mandatory data fields are assessed for completeness
  • Accuracy – all data are assessed for validity and internal consistency

The WBDR data quality team works with all HTCs, providing training and feedback on the quality of all data as follows:

  • The data at each HTC undergo an initial full data quality assessment after the first patients are enrolled (at least 5 but no more than 20) to ensure understanding of the data entry procedures.
  • A full data quality assessment consists of running all patient data through a series of automated and predefined edit checks for completeness (based on % of mandatory data fields which are complete) and accuracy (% of data fields that are internally consistent and valid); this provides an overall % of data quality for completeness and for accuracy which is reported back to the HTC.
  • Data that are inconsistent, invalid or out of range, or incomplete, are flagged by the system and are communicated to the HTC via Data Clarification Forms, with requests to confirm, update or correct data.
  • Data updates/corrections are monitored by the WBDR data quality team to ensure completion.
  • Each HTC is rated on their overall data quality using the WBDR Data Quality Rating classification levels (Figure 1). All HTCs reaching the Leader level (95-100% of data is complete and accurate), are recognized in the annual WBDR Data Report. HTCs at the Intermediate Level or below are provided additional training.
  • Feedback and progress in data quality are communicated to the HTC at each subsequent data assessment; frequency of data quality assessments vary based on quality of data at the HTC and number of patients enrolled, but are conducted at least annually.

Data Quality of the WBDR-GT module

Figure 1: WBDR Data Quality Rating

Please see WBDR Data Quality Framework Overview for more information.

Please see the links to patient brochures and identification cards, available in English, French and Spanish.

Patient Brochure

        

Identification Cards

        

If you are a patient with hemophilia interested in participating in the WBDR, please contact your HTC and inquire about their participation in the WBDR.

If you are an HTC interested in participating in the WBDR or are interested in any other information pertaining to the registry, please send an email to [email protected].

Please see the frequently asked questions (FAQs) for more information.

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Spanish


Latest Research News


To each PWH who has kindly agreed to share their data: thank you for helping improve the quality of care for people with hemophilia around the world!

To each of the WBDR HTCs: Thank you to all of the dedicated staff at participating hemophilia treatment centers 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 is allowing us to continue to develop this important initiative. The World Bleeding Disorders Registry is supported by funding from:

Visionary Partners
Collaborating Partners
 
 
 

Functional Scales

The outcomes of interest collected by the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and patient-reported outcomes.

The WBDR includes five functional scales as part of its extended data set:

Quality of Life Scale

The outcomes of interest collected in the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and quality of life. The quality of life scale, EQ-5D-5L, is part of the WBDR extended data set. It is available in more than 130 languages and in different modes of administration.

To download the English (US) version of the EQ-5D-5L, please click here.
To download the Spanish (Argentina) version of the EQ-5D-5L, please click here.
To download the French (France) version of the EQ-5D-5L, please click here.
To download the Russian (Russia) version of the EQ-5D-5L, please click here.
To download the Arabic (Egypt) version of the EQ-5D-5L, please click here.

If you would like a different language, please email us at [email protected].

Other available languages include:

Amharic
Arabic (Algeria, Morocco, UAE)
English (Ghana, India, Jamaica, Kenya, Nigeria, and the Philippines)
French (Algeria, Belgium, and Morocco)
Hungarian
Malayalam
Nepali
Punjabi
Russian (Ukraine)

Serbian
Spanish (Argentina, Panama, Spain, and the U.S.A)
Swahili
Tagalog
Thai
Twi
Ukrainian
Urdu
Vietnamese

For more information, please visit: euroqol.org/eq-5d-instruments/eq-5d-5l-about

WBDR Minimal Data Set

The WBDR Minimal Data Set (MDS) is a set of data on demographics, diagnosis, symptoms and treatment which are collected on patients participating in the WBDR.

WBDR Extended Data Set

The WBDR Extended Data Set (EDS) is a larger set of data, with more details than the MDS, which includes questions on patient demographics, diagnosis, symptoms, treatment and burden of disease. The EDS can be used by hemophilia treatment centers to collect data on patients participating in the WBDR. The WBDR Extended Data Set (EDS), was added to the database in March 2019.