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Hemophilia Today - March 2018

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 MARKET study currently recruiting participants. (Deadline to participate has been extended to March 31, 2018.)


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

Recombinant factor concentrate charts

Please check out our updated charts listing the recombinant factor concentrates and their description.

Click here for the rFVIII chart

Click here for the rFIX chart

Introduction of new rFVIII products by Héma-Québec

That’s right! There will be more changes in the availability of coagulation products in the coming weeks now that Héma-Québec has announced it has awarded new contracts for recombinant factor VIII concentrates. This is the outcome of the call for tenders that took place in the latter half of 2017.

Click HERE to read the article.

1986-1990 Hepatitis C - CLASS ACTION SETTLEMENT

If you or a family member received a blood transfusion or blood products in Canada between January 1, 1986 and July 1, 1990 and contracted hepatitis C but missed the original deadline to apply, you may now be compensated up to $329,000 or more.

For more information, please visit the website http://hepcclassaction.ca or call 1-866-353-4003.

You must submit a completed late claim request in accordance with the Plan to the Administrator no later than March 31, 2025. If a court appointed referee determines that you are eligible to submit a claim, you will be provided with a late claims application package. You must submit a completed late claims application package to the Administrator within two years of being advised that the referee has determined that you are eligible to submit a claim.

Update on CBS contracts for FVIII and FIX for 2018-2020

MONTREAL – December 15, 2017 – On October 31, Canadian Blood Services (CBS) released the results of the Request for Proposals (RFP) for the period of April 1, 2018 to March 31, 2020 with the potential of two one-year extensions. As communicated by the Canadian Hemophilia Society (CHS) at the time, those results were dependent on several decisions by Health Canada. Health Canada’s decisions are now known and they have an impact on the product mix first announced by CBS.

CLICK HERE to read the CHS full statement.

2017 Report Card on Canada's Blood System

November 26, 2017 marks the 20th anniversary of the final report of the Commission of Inquiry on the Blood System in Canada, commonly known as the Krever Commission. The Commission was set up in 1993, following Canada’s worst public health tragedy in which 1200 people were infected with HIV and many thousands with hepatitis C through infected blood and blood products, transfused in the 1970s and 1980s.

This Report Card constitutes the sixth time in the last 20 years that the Canadian Hemophilia Society has reported to Canadians on the state of the country’s blood system.

Response from Canadian Blood Services

Response from Héma-Québec
(in French)

Press release

CBS announces factor concentrate contracts for 2018-2020

OTTAWA – November 1, 2017 – Canadian Blood Services (CBS) has announced the Request for Proposals (RFP) results for clotting factor concentrates for the period of April 1, 2018 to March 31, 2020 with the possibility of two one-year extensions.

The results of two other RFP processes, one for the fractionation of CBS plasma and the other for the commercial supply of Immunoglobulins and albumin, were also announced this week.

CLICK HERE to read the complete statement from the CHS Blood Safety and Supply Committee.

Webcasts from Rendez-vous 2017

Webcasts of the Rendez-vous 2017 presentations from the Medical and Scientific Symposium (May 26, 2017) are available on YouTube.

Click here to access the presentations of your choice.

Products in the pipeline

Never have so many coagulation therapies been in development or “in the pipeline”. So many, in fact, that it has become difficult to keep track of them all. So the CHS is publishing four charts, one each for clotting factor concentrates, inhibitor products, non-factor coagulation products that may prove efficacious in both inhibitor and non-inhibitor patients, and gene therapy, to help everyone stay informed of their progress through clinical trials and regulatory approval.

CLICK HERE to access the charts.

MyCBDR: the promotional video on YouTube!

The CHS produced 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.

ALSO ...

MyCBDR: The best way to report treatments and bleeds to your health care team.

This flyer has been produced by the CHS to promote the use of MyCBDR to patients. It includes, among other things, a list of the benefits of using MyCBDR, its special features and information on how to register.

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.

Menstrual Assessment Chart (PBAC)

Chart in PDF format

, a period flow assessment app is also available.

Apple Store: apple.co/1N93E6h

Google Play Store: bit.ly/1SBl8L8

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.

A bandage is not enough.


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...

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