Our Partners











Research Projects Funded in 2013

Living with and managing hemophilia from diagnosis and through key care transitions: The journey for families of children with hemophilia


Dr. Roberta Woodgate
University of Manitoba – Winnipeg, Manitoba
First year funding

Co-Investigator: Dr. Milena Pirnat

The purpose of this study is to arrive at an increased understanding of the experiences and needs of families of children with hemophilia as they learn to live with and manage hemophilia from diagnosis through other key care transitions. Thirty families will be recruited with the intent to involve parents as well as their children with hemophilia. Data collection methods include interviews combined with photovoice, which is a process that involves participants taking photographs to document their experiences. The significance of this innovative study is threefold.
First, this study will improve our understanding of the experiences and needs of families of children with hemophilia as they learn to live with and manage hemophilia from diagnosis through other key care transitions by listening to their voices. Second, children with hemophilia and their parents will have meaningful involvement and play an active role in defining issues, considering solutions, and identifying priorities specific to families of children with hemophilia. Third, the knowledge gleaned from this study may be used to inform and improve existing services and programs as well as develop new services and programs that are meant to enhance how families of children with hemophilia manage and deal with hemophilia.



Assessing differential immunogenicities of factor VIII molecules

Assessing differential immunogenicities of factor VIII molecules: Do previously treated hemophilia A patients represent a valid model? A clinical epidemiology investigational approach


Dr. Angela Barbara
McMaster University – Hamilton, Ontario
One year funding

Co-Investigator: Dr. Alfonso Iorio

The biggest problem in treating people with hemophilia A is the development of inhibitors. Inhibitors stop the standard treatment of replacement with missing clotting factor from working. Testing new hemophilia A drugs to make sure that they do cause patients to develop inhibitors has found mixed results. Some have suggested that changing from one drug to another drug increases the chances of getting an inhibitor. Because it was assumed inhibitors develop soon after treatment, usually in young kids, the best model for studying inhibitiors after a switch has been in previously treated patients (PTPs). However, recent evidence shows a constant lifelong rate of inhibitors. So, we challenge the idea that a product switch is most likely causing inhibitors in PTPs by reassessing published cases.