FREQUENTLY ASKED QUESTIONS: myWBDR
What is myWBDR?
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).
What is the objective of myWBDR?
myWBDR aims to empower patients by providing them with a convenient tool to record and monitor their bleeds, pain levels, treatments, and health status. The use of this application can contribute to improved clinical management and the generation of valuable evidence for bleeding disorders research and decision making.
Who can participate in myWBDR?
Patients diagnosed with hemophilia and/or VWD who are enrolled in the WBDR through their Hemophilia Treatment Centers (HTCs) are eligible to participate in myWBDR.
What information can be recorded using myWBDR?
- Bleed information (number of bleeds, date, location)
- Level of pain
- Treatment
- Health status using EQ-5D-5L and Patient Reported Outcomes, Burdens, and Experiences (PROBE) questionnaire (for Hemophilia patients)
What are the benefits of using myWBDR?
- An easy and convenient way to document accurate bleed and treatment information.
- Clear and intuitive data visualization of the user’s bleeding events, associated pain levels and health status.
- Prompt transmission of data entered in myWBDR to the WBDR, enabling clinicians to access patients’ bleed and treatment data in real-time.
- Offline functionality that allows users to record data even without an internet connection. Once an internet connection is available, the recorded data are automatically transmitted to the WBDR database.
- Enabling users to contribute to advancing the understanding of bleeding disorders and enhancing the quality of care and treatment worldwide.
Is the use of myWBDR mandatory?
No, it is optional.
When should I use the app?
We recommend that myWBDR be used whenever you have a bleed and/or receive treatment.
If another family member has hemophilia and/or VWD, can they use the app?
Yes, as long as they are registered in the WBDR and have an email address.
What do I do if I do not know the details of my treatment?
Enter what you do know and for missing details please ask your care provider at the HTC and enter the details.
Will myWBDR notify my care provider if I had a bleed?
No. However, your provider can access your app data through the WBDR website.
What about the privacy of participants?
All information entered in the WBDR and in myWBDR are anonymous and confidential. Patient names or other identifying information will not be stored. Other users of myWBDR cannot view your data.
What about data protection?
The WBDR database is managed through a collaboration between the World Federation of Hemophilia (WFH) and BCB Medical, based in Sweden. Data policy guidelines of BCB Medical adhere to both the CE-mark (Conformité Européenne) and the UK standard IGSoC (Information Governance Statement of Compliance), as well as General Data Protection Regulation (GDPR).
Who has access to your data?
You have access to your data through the myWBDR app. Your HTC care team and the WFH will have access to the imported data through the WBDR.
How will your information be used?
Your data can be used by your healthcare team to assess the progress of your care. Your anonymized data may be used for research purposes as approved by a research ethics committee and any other authority required by the applicable laws. Note that the e-mail address and username used in the application will never be shared with any external entity.
For more information visit https://wfh.org/myWBDR
FREQUENTLY ASKED QUESTIONS: WBDR
What is the WBDR?
The World Bleeding Disorders Registry (WBDR) is an online web-based data entry system that provides a platform for a network of hemophilia treatment centers (HTCs) around the world to collect uniform and standardized patient data to guide clinical practice.
What is the goal of the WBDR?
The WBDR aims to improve the quality of care for people living with hemophilia and/or VWD around the world by collecting uniform and standardized patient data from a network of HTCs worldwide.
What are the benefits to using the WBDR?
- Enhanced Data Management: The WBDR facilitates efficient and centralized data management for hemophilia and/or VWD patients. By utilizing an online web-based data entry system, the WBDR ensures that patient data is collected, organized, and securely stored in a standardized manner. This streamlined approach improves data accuracy, accessibility, and overall data management capabilities, enabling better analysis, monitoring, and decision-making for healthcare providers and researchers.
- Bridging Knowledge Gaps: The WBDR fills gaps in care and knowledge by gathering real-world data on the patient’s clinical experience worldwide. These data are invaluable for researchers and policy influencers, enabling them to generate evidence and develop advocacy initiatives that address the needs of individuals with bleeding disorders.
How does the WBDR work?
Healthcare providers from participating HTCs will talk to eligible patients about being enrolled into the WBDR. HTCs will enroll patients who consent to have their health data included in the registry.
What about the privacy of participants?
The WBDR prioritizes the privacy and confidentiality of participants. With informed consent from patients, the registry stores anonymous and de-identified data related to their bleeding disorder, including diagnosis, severity, symptoms, and treatment. This approach safeguards individual privacy while still allowing for comprehensive data analysis and research.
For more information about the WBDR, visit https://wfh.org/wbdr
