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news-myWBDR-may9

Introducing the myWBDR mobile app: a new WBDR data collection tool

There’s a new data collection tool that people with hemophilia (PWH) can use with the WFH World Bleeding Disorders Registry (WBDR)!

Aussi disponible en : English Español

The myWBDR mobile application is designed to make it easy for PWH to collect patient reported outcome data, empowering them to participate in monitoring their own health outcomes and contributing to advancing our knowledge of hemophilia through data. Come join us on Tuesday for the official launch of myWBDR and test the app yourself at the WFH 2022 World Congress.

The myWBDR app allows users to securely track bleeds, level of pain, and treatment. Bleed and treatment information can be recorded on the app in less than one minute. Data are transmitted accurately and securely to the WBDR database. myWBDR works offline and is available in English, French, Hindi, Russian, Spanish, Thai, and Vietnamese. If you are registered at a hemophilia treatment centre (HTC) that is participating in the WBDR, this app is right for you.

The myWBDR app also collects changes in health status through the Patient Reported Outcomes Burdens and Experiences (PROBE) and the EQ-5D-5L questionnaires. The PROBE Study is celebrating 10-years of being a valuable and validated hemophilia research tool to enhance the collection and interpretation of real-world quality-of-life data—powered by the voice of patients. When using PROBE within the myWBDR app, PWH will be able to see how their quality-of-life scores change over time, and, shortly, users will be able to see how they compare to others like themselves! PROBE is growing rapidly. It currently reaches over 100 countries, with more on the way. Join us to learn about the many ways that PROBE research can be used to amplify registry data, and how it’s being used within our community. Through a secure connection, users will be able to access the full power of both WBDR and PROBE using a streamlined interface.

To download myWBDR for iPhones, click here.

To download myWBDR for Android phones, click here.

To find out more about the WBDR, click here, or visit the WFH Resource Centre (1113).

To find out more about PROBE, click here, or visit the PROBE Booth (1114).

Join us for refreshments and like-minded company at the official myWBDR launch event!

Date: Tuesday May 10th, 2022
Time: 5:15 – 6:30 pm
Room: 524

We’ve accomplished a lot this year, we need your help to continue strong.

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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.

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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).

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