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Hemophilia Today - November 2016









MyCBDR: the promotional video now on YouTube!


The CHS just launched a promotional video showing how easy and fast it is to report bleeds and treatments to your treatment centre via MyCBDR.

Click on the image to watch the video.








The MyCBDR app now available in French

A French version of the MyCBDR mobile app is now available on the Apple Store and Google Play Store. The app is named MonRCTC.

Please note that this is a separate app and hence needs to be downloaded and used separately.

It is very important to follow the instructions below should you wish to use the MonRCTC app.

Current MyCBDR mobile app users who would like to use MonRCTC instead must perform the following steps to swap applications:

  1. Ensure all data recorded in the MyCBDR mobile app has been synchronised to the CBDR database, ie. the user must log on to the MyCBDR mobile app in Online mode and wait for all data to be synchronised. (If desired and to be certain that all data has been synchronised, users can log on to the MyCBDR web application and confirm their data is correct and up to date.)
  2. Log out of the MyCBDR mobile app.
  3. Uninstall the MyCBDR mobile app. 
  4. Install the MonRCTC mobile app from the relevant app store (depending on the user’s device).
  5. Log on to the MonRCTC mobile app and wait for all data to be synchronised.

If you have any questions or concerns please feel free to write to help@cbdr.ca or help@mycbdr.ca so that their dedicated help desk officers can help you.



Good news about the 86-90 surplus in the Trust Fund for the 1986-1990 Hepatitis C Settlement Agreement

The federal government has advised the Joint Committee that it will not appeal the court decisions. Furthermore, the 86-90 website states that the Joint Committee is taking steps to implement the recommendations: they are striving to have at least some of the recommendations implemented in December 2016.

For more information, please click HERE.

CHS support to research and market studies

Several times in the past, the CHS has invited the bleeding disorder community to participate in research and market studies. Once again, we wish to reinforce the importance of these projects and the benefit for our community to participate. Research and market studies are crucial to the advancement of care and treatment. This is your chance to voice your concerns and priorities when it comes time to your care and treatment or those of your child. At many levels, these studies are often one step closer towards a better quality of life.

These studies, however, need our community to gather sufficient data to be relevant.

Please take the time to see what is presently happening with regards to research and market studies and to see if you could take an active part in them.

Click here for more details on the RESEARCH studies currently recruiting participants.

__________________

Click here for more details on the MARKET studies currently recruiting participants.


CHS Statement on the SIPPET study

For many years there has been debate in the medical community about which class of products has the lowest risk of inhibitor development in previously untreated patients (PUPs) with hemophilia A: recombinant factor VIII or plasma-derived factor VIII?

Some studies showed a lower rate of inhibitor development with plasma-derived FVIII; other studies did not. The studies, however, were quite small and retrospective or observational in nature, and so they didn’t provide conclusive results.

The SIPPET study is the first prospective, randomized trial to attempt to answer the question.

CLICK HERE to read more about this important topic.

MyCBDR app now available!

MyCBDR app is now available for free from the Google Play Store (Android version) and the Apple Store (iOS version). If you are already using the MyCBDR website to record your treatments and bleeds, you can log in to the app using your MyCBDR credentials.

If you have not registered for MyCBDR yet, you can submit your request at www.mycbdr.ca/MyCBDR/Account/Register. Remember to select your HTC from the drop-down menu available at registration. The AHCDC and McMaster University are working continually to enrol more HTCs into the CBDR network. In case you belong to an HTC that is not yet using CBDR, you can still request a MyCBDR account by selecting “Holding Center for MyCBDR” as your HTC.

Please feel free to send in your questions, comments and feedback to help@mycbdr.ca.

N.B. The French-language version of the app is now available. Please read the above message regarding the French app.


Menstrual Assessment Chart (PBAC)




Chart in PDF format




“Me”
, a period flow assessment app is also available.

Apple Store: apple.co/1N93E6h

Google Play Store: bit.ly/1SBl8L8














A bandage is not enough.





HELP SPREAD THE WORD ABOUT INHERITED BLEEDING DISORDERS.


Click here for more information about this important public awareness and outreach campaign or to download promotional material.


You and your family depend on research...






Make a difference - Help save lives


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