FREQUENTLY ASKED QUESTIONS: myWBDR

What is myWBDR?

myWBDR is a mobile application for people with hemophilia (PWH) participating in the World Bleeding Disorders Registry (WBDR).

What is the objective of myWBDR?

myWBDR aims to empower PWH by providing a tool for you to produce better evidence and improve your clinical management.

Who can participate in the WBDR?

Patients diagnosed with hemophilia A or B who are registered at one of the participating HTCs are eligible for participation in the WBDR.

What information can you record using myWBDR?

• Your bleed and pain level
• Your treatment
• Your health status using EQ-5D-5L and the Patient-Reported Outcomes, Burdens, and Experiences (PROBE) questionnaire
  

What information can you record using myWBDR?

1. myWBDR is a digital tool that can replace paper diaries of bleeds and treatments.

2. Accurate bleed and treatment data can be recorded in less than 1 minute.

3. myWBDR users can record and track changes in their health status through EQ-5D-5L and PROBE questionnaires.

4. Data from myWBDR will be sent to the WBDR and the clinicians can see the patients’ bleed and treatment data in real-time.

5. Patients can play an active role in helping researchers to better understand hemophilia and improve the quality of care and treatment for people with hemophilia around the world

Is the use of myWBDR mandatory?

No, it is optional. However, myWBDR will enable you to record bleeds and treatments faster, easier, and more accurate than paper record forms. The patient reported data also complements clinician entered data in the WBDR to provide a real view of PWH's everyday experience.

When should I use the app?

myWBDR is designed to record bleeds and treatments. We recommend that myWBDR be used whenever you have bleed and/or receive treatment.

What features does myWBDR have?

• Simple data visualization of your bleeds (number, location) and the level of pain associated with that bleed events.
• Easy access to EQ-5D-5L and PROBE questionnaire
• Offline feature so you can record your data without an internet connection. Once WIFI/internet connection has been established, the data will be automatically sent to the WBDR database.
  

If another family member has hemophilia, can they use the app?

Yes, as long as the patient is registered in the WBDR.

What do I do if I do not know the details of my treatment?

Please consult your doctor at the HTC.

What do I do if I do not know the details of my treatment?

Please consult your doctor at the HTC.

Will myWBDR notify my doctor if I had a bleed?

No, but your bleed and treatment data will be sent to the WBDR. Therefore, your doctor will have access to the data.

What about the privacy of participants?

All information that is entered in the WBDR and in myWBDR is anonymous and confidential. Patient names or other identifying information will not be collected.

What about data protection?

The WBDR database is being developed through a collaboration between the WFH, Karolinska Institute based in Sweden and Health Solutions, also based in Sweden. Data policy guidelines of Health Solutions adhere to both the CE-mark (Conformité Européenne) and the UK standard IGSoc (Information Governance Statement of Compliance). The WBDR database is compliant with the new General Data Protection Regulation.

Who has access to your data?

As this data is imported into your WBDR file at your Hemophilia Treatment Center, your care team will have access to this data. The WFH will have access to de-identified and aggregate data and may use such data for research related to people with hemophilia.

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 centres (HTCs) around the world to collect uniform and standardized patient data and guide clinical practice.

What is the goal of the WBDR?

The WBDR aims to improve the quality of care for people living with hemophilia around the world.

Why do we need the WBDR?

The WBDR is intended to fill the gaps in care and knowledge by collecting real world data on the patient clinical experience around the globe. Researchers and policy influencers will be able to use this patient data to generate evidence and build advocacy initiatives aimed at health policy decision makers.

How does the WBDR work?

Healthcare providers from participating HTCs will talk to each of their hemophilia patients about being enrolled into the WBDR. HTCs will enroll patients who consent to have their details included in the registry.

What about the privacy of participants?

With informed consent from the patient, the WBDR stores anonymous and de-identified data about the person’s disease, such as hemophilia type and severity, symptoms and treatment.

For more information about the WBDR, visit