World Bleeding Disorders Registry

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].

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.

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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.

• WBDR data sets
• Functional scales
• Quality of life scale

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

• Quick reference guide
• WBDR User Manual, v1.0

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

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

ENGLISH  
FRENCH  
SPANISH   

Identification Cards

ENGLISH  
FRENCH  
SPANISH   

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.

French
Spanish