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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.
  • PatientView and Health 2.0 are looking for patients and carers to tell app developers how health apps can be improved to better meet the needs of patients and carers.
  • 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.

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.

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.

Products in the pipeline - NEW UPDATE (September 12, 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.

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.

Hemophilia Today - August 2014

Submission on the funding of extended half‐life factor IX concentrates

Alprolix™, an extended half-life factor IX for the treatment of hemophilia B, was approved by Health Canada in March. The provinces and territories are currently reviewing whether or not to add Alprolix 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.

E-novella spreading the word on bleeding disorders launched 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.

2014 CHS research grants awarded

You and your family depend on research...

A bandage is not enough.


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

Make a difference - Help save lives

We can stop the suffering of those living with hemophilia and other bleeding disorders. But we can't do it alone. Only with the generous financial support of caring Canadians can we make our dream come true.

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