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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.

On-going RESEARCH studies currently recruiting participants:
  • Invitation to families of children with bleeding disorders to participate in an interview-based research study
  • Do you have mild hemophilia?
  • Carriers of hemophilia wanted for survey-based research study
  • Web survey about perceived well-being in people with hemophilia

Click here
for more details on each of these research studies.


On-going MARKET studies currently recruiting participants:
  • Absolutdata is currently looking for adults and youth as well as parents of children with hemophilia A for a market research study.
  • HealthPulse is currently looking for patients with hemophilia A and a low titre inhibitor who are undergoing immune tolerance induction (ITI) therapy or who are currently being treated with a bypassing agent (Niastase, FEIBA).

Click here
for more details on each of these market studies.

Products in the pipeline - NEW UPDATE (November 11, 2014)

Never have so many clotting factor concentrates 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 five charts, one each for factor VIII, factor IX, inhibitor products, other coagulation products, and one for factor VIII and IX and inhibitors together, to help everyone stay informed of their progress through preclinical work, clinical trials and regulatory approval.

Click here for more details.

E-novella spreading the word on bleeding disorders on Wattpad

One in 100 Canadians carries an inherited bleeding disorder gene, yet so many remain undiagnosed. In an effort to educate a younger audience about the symptoms and risks of bleeding disorders, we’ve developed an e-novella – entitled ‘A Negative’ – to spread the word in an engaging and memorable way.

Playing off the popular Harlequin romance genre, ‘A Negative’ tells the story of a young woman unknowingly living with von Willebrand disease. We’ve published the e-novella on Wattpad – the world’s largest online community of writers and readers – in order to connect with young women across Canada. This unique approach introduces the issue into a different medium, enabling us to speak to and educate an engaged but unsuspecting audience.

CLICK HERE for the press release.

CLICK HERE to read 'A Negative'.

Hemophilia Today - November 2014

The CHS moved!

Please be advised that the national office of the CHS moved last Friday, October 24.

Our new address is:
301-666 Sherbrooke Street West
Montreal, Quebec H3A 1E7

Phone and fax numbers remain the same.

Health Canada has issued a Notice of Compliance (NOC) for Harvoni (ledipasvir/sofosbuvir)

Health Canada has issued a Notice of Compliance (NOC) for Harvoni® (ledipasvir/sofosbuvir), the first once-daily single tablet regimen for the treatment of chronic hepatitis C genotype 1 infection in adults.

Click here for the details of the announcement.

Second study suggests higher risk of inhibitors with Kogenate/Helixate in previously untreated patients with hemophilia A

MONTREAL – October 6, 2014 – A second study in less than two years suggests a higher risk of inhibitors in previously untreated hemophilia A patients (PUPs) with Kogenate FS and Helixate FS compared to other recombinant FVIII products. The study by Calvez et al of more than 300 boys in France, published in the journal Blood on September 24, 2014, found that the risk of developing inhibitors was close to 60% higher.

In January 2013, the Research of Determinants of Inhibitor Development (RODIN) study group also reported a similarly higher risk of inhibitor development in PUPs treated with this second-generation full-length rFVIII, Kogenate FS/Helixate FS, compared to all other FVIII products.

At that time, the Association of Hemophilia Clinic Directors of Canada recommended to its members that they “consider these findings as a factor in their decision-making regarding product choice for newly diagnosed PUPs with severe hemophilia A.

The RODIN study was reviewed by regulators and, in December 2013, the European Medicines Agency’s (EMA) concluded that the benefits of Kogenate FS/Helixate NexGen (Helixate FS in Canada) continue to outweigh their risks in PUPs with hemophilia A.

Following the most recent paper, however, the World Federation of Hemophilia’s Therapeutic Products Safety, Supply and Availability Committee (TPSSAC) issued a statement which said: “Based on the available published data, it may be prudent, where other safe clotting factor concentrates are available, to consider not using Kogenate FS/Helixate NexGen for newly diagnosed PUPs with severe hemophilia A.” The WFH TPSSAC also stated: “There is no evidence of a higher risk of inhibitors with this product in previously treated patients.Click here for the complete statement.

Regulatory agencies such as the EMA and the U.S. FDA are evaluating this latest data on inhibitor development. Both the CHS Blood Safety and Supply Committee and the WFH TPSSAC are monitoring developments. Please check on the CHS and WFH Web sites for updates.

NEW CHS resources about HCV treatment support for 1986-1990 claimants

Accessing treatments for hepatitis C through the Hepatitis C January 1, 1986 — July 1, 1990 Class Actions Settlement: What you need to know

If you are a patient who received tainted blood or blood products and a registered claimant of the Hepatitis C (HCV) 1986-1990 Class Actions Settlement, now is a good time to speak to your doctor about new treatments for HCV. Treatment has progressed significantly, and it may be the right time for you to seek a cure.

People who are approved claimants under the Hepatitis C January 1, 1986 — July 1, 1990 Class Actions Settlement may be reimbursed for their costs for treatments and generally accepted hepatitis C medications that are not recoverable under any public or private health care plan. Moreover, thanks to a collaborative effort between the CHS and Gilead Health Sciences Canada, The Momentum Support Program can now provide upfront payments to those eligible for the high-cost treatment Sovaldi (sofosbuvir) while the claimants wait for a reimbursement from the 1986-1990 plan.

Because this is not well known by the claimants themselves nor their health care providers, the CHS has developed a new resource to provide more information.

Please click here for more information and access to the new brochure.

Submissions on the funding of extended half‐life factor concentrates

Eloctate™ and Alprolix™, extended half-life factor VIII and factor IX for the treatment of hemophilia A and B, were recently approved by Health Canada. The provinces and territories are currently reviewing whether or not to add them to the list of factor concentrates reimbursed through the blood system budget, and then distributed by Canadian Blood Services and Héma-Québec. The Canadian Hemophilia Society has submitted its recommendations.

Click here to read the CHS recommendations re Eloctate.

Click here to read the CHS recommendations re Alprolix.

A CHS ally now president of SOGC

Last June, the Society of Obstetricians and Gynaecologists of Canada (SOGC) appointed Diane Francoeur, MD, FRCSC, as its new president. Dr. Francoeur has long been associated with the inherited bleeding disorder community as part of the comprehensive care team of the Hemostasis Centre at Sainte-Justine Hospital in Montreal.

In this regard, she was significantly involved in the publication of The Management of Women with Bleeding Disorders prepared, in 2003, by the Subcommittee on Women with Bleeding Disorders for the Association of Hemophilia Clinic Directors of Canada (AHCDC of which she was affiliated. She also played an active role  in the creation of the CHS coderouge program as a member of its Advisory Committee.

We are happy to share with you excerpts from her acceptance speech in which she affirms her dedication for bleeding disorders in women. Click here.

NEW - Identifying common joint & muscle bleeds

The Canadian Physiotherapists in Hemophilia Care (CPHC) have developed an information booklet designed to help people living with bleeding disorders identify common joint and muscle bleeds in their earliest stages, so that proper treatment can begin as soon as possible. It is written to help people of all ages perform a self-assessment and to help parents assess their children.

Click here to download the booklet.

If you want copies of the booklet, please contact the CHS national office.

A bandage is not enough.


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

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